Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Friday, November 5, 2010

Day +43 November 4

After a valiant fight for nearly eleven months, darling Elle is no longer on pain medicines,  no lines, no tubes, no machines.  Elle is out of her cocoon of bandages and has flown to heaven with butterfly wings.

Last night at 5:18 PM Elle died in my arms, with her dad whispering loving comfort in her ear.  She held our fingers and squeezed till the end.  She did not look scared, only peaceful.  And she knew we were with her. 

Happy Elle on her first day of the clinical trial, September 13, 2010

Her lines were successfully replaced and working well and her yeast it seemed was finally at bay. But her blood pressures were so low for so long. Her body finally gave out once she was placed back on Prisma and we knew it was time to say goodbye and allow her a calm, comfortable passing. Really, we could not have asked for a better death for her. We were both there, we fought as long as was appropriate, and were able to get her very comfortable and hold her before she died as we haven't done in so long.

Many staff were present.  She had a WONDERFUL care team.  RNs Gretchen & Jody, Dr. Steiner, Dr. Nahara, Dr. Rajpal, Dr. Gupta, Sheena RT, and later Dr's Miller and Tolar, Nurse Alexis were there in the room, caring and  most of them crying. So many other nurses on both the PICU and BMT units took care of her with astounding care. 

Pastor Dale was immediately at our side and Stefan's sister Ginger and Karin soon after.  We prayed and cried and attempted to let go. Pastor performed Commendation of the Dying.  Later Family Child Life and her nurse made prints and plaster casts of her unbandaged feet and hands. Chloe made hand prints as well.  We bathed and dressed her one last time, finally able to dress her with the seams in and without worry of hurting her.

Chloe is doing very well considering. She is so intuitive. A week or so ago, at bedtime prayers, when we reached the part about asking to heal Elle or ease her suffering, Chloe said, " Mama, Baby Elle might go to heaven" and nodded. I was taken aback. I told her, "we are praying and the doctors and nurses are working very hard to help her. She may get much better and some day come home and play with you.  Or, she may go to heaven and have no more pain. Chloe said,"yes, she might go to heaven with Bella". She said this as she was stroking my hair then pulled me down to kiss me. She totally blew me away; a complete role reversal. And she was right. I guess she is much closer to the spirit world than I am, only having been on this Earth for three years. When Family Child Life at the hospital prepared her for Elle's death, she seemed to get it right away. She and her cousin drew pictures to give to Elle.  Chloe's was of swans.  When she finally came into the room, I was holding Elle wrapped in a soft blanket and she walked up and said, "Oh, Baby Elle is born". What a perfect way to put it. She asked to hold her hand, was delighted that we dressed her in the polka dot dress that Chloe bought for her, and held her and kissed her head. It was beautiful.

We will miss her forever and are so comforted in the thought that her short life impacted others so much more than we could have in a long lifetime.

I believe that Stefan's and my grandparents were waiting for her in heaven with open arms. I believe she walks with Jesus and rejoice that she is in paradise without suffering. I believe she knew how much we loved her and always will and will be waiting for us when it is our time. I also believe that worldly time is different from spiritual time and a day unto the Lord is like a thousand years.  Maybe to Elle, no time really will pass until she sees us although it will be an eternity to us.  I believe God is good, and that He is crying with us even has He delights to have Elle with Him again, and will carry us through the pain.  There are so many things that I feel certain of.  It is like light in the darkness.

Her last look at the world

Elle's hand in Chloe's

Nurse Erin wrote this on the board in Elle's room the first day she took care of her and she was the final nurse to care for her

This was the view from the PICU hours before she passed

We will miss her for the rest of our lives.
Service arrangements will be announced.  Thank you so much for all of you who have loved and supported Baby Elle.


  1. Have been reading and praying from afar (Australia). So sad to read of your loss but afirm with you that Elle is free of pain, dancing with Jesus. Will continue to read and pray.

  2. I am so sorry. Janet from CT

  3. I can't believe the sweet little dolly is gone!! My heart is broken....

  4. Dear Pop Family,

    My heart is breaking for you all. I have no words that could explain how so very sorry I am for your loss. Sweet Baby Elle has touched my life. I can only imagine how happy Bella was when she saw Elle yesterday! What a joyous reunion. None the less, I can't imagine your pain as parents. Please know that I will continue to pray for your family.

    Megan from WV

  5. I don't know what to say.

    I am so, so sorry for you dear Pop family.

  6. I'm so sorry to hear about Sweet Baby Elle. I'll be praying for God to give you comfort and strength during this very diffucult time.
    Rachel (from Louisiana)

  7. Thank you for sharing her last moments with all of us. Next month it will be 6 years since we lost our son to complications of EB. My heart aches when I hear of another EB baby getting their wings. But I know Elle is up in Heaven with Garrett and the dozen of other Butterfly Angels, pain and bandage free running through the clouds, playing tag with one another! I know they are all looking down upon us.

    Thinking of you and your family,

    Sara Denslaw
    Winter Garden, FL

  8. I've been following your journey with Elle and my heart is broken. Peace to the Pop Family.


  9. So saddened to hear of Baby Elle's passing. may God wrap you in his arms and provide you with the comfort & peace to get through this.

    Brenda (Kansas)

  10. Sending our condolences, love, and prayers to you and your family. My heart is breaking for all of you.

  11. Thank you Becky for sharing your last moments with Elle. It was a sweet read though heartbreaking for your loss of Baby Elle. Yes, she is bandage, pain, and EB free and up with God and your relatives who have gone before. Know that I am crying as I read this and I'm sure so many others who read this Blog and who have since found out the news are also crying for your family. All who knew Elle will miss her. I know it's hard, so very hard for you but know that I will continue to pray for Elle, and your family as you grieve for your darling and sweet baby Elle.
    Candace C

  12. I am so, so, so sorry. My heart is broken for your family. I was so worried today and kept coming back...hoping and praying for an update. Hoping you were just busy and couldnt post. Then this afternoon I looked up into the sky and wondered if Elle was with Bella now I know she is.

    Sweet Elle...sending you hugs, kisses and bunches of love. What an amazing little girl you are. You will be missed my many...you touched many...you will be remembered by many.

    Denise WI

  13. I am Truely Sorry for your loss of your Precious Elle!! All our Love, Thoughts and Hearts go out to you and your family through this very difficult time!! HUGE Huge ((Hugs)) to You All!!

  14. Oh dear. I checked about every two hours today after reading Daylons blog. I so wanted everything to be okay. Like with Bella, my heart just sank and my hair raised all over my body.

    My heart aches for you. For your loss. The loss of your sweet baby Elle. Take comfort in each other and let God strengthen and hold you in his arms.

  15. I am so sorry. Please know I am thinking of your family. God speed sweet Elle.

  16. Dear Pops, each and all of you,

    This has taken me completely by surprise.

    I know you through the Ringgolds and have commented briefly and with optimism.

    There were a few hints that things might be taking a less favourable turn but perhaps I chose to disregard those hints.

    All I can say is that families like yourselves have made me reconsider every small section of my life.

    I love the way that Elle's name is sort of enfolded in Bella's name. They orbit one another.

    Mine are words from a stranger at a time when you do not need strangers poking their noses in to your lives. But I feel I know your story, Pops.

    From Vancouver, Canada, on a quiet night, with profound sympathy and great fondness,


    PS I saw a simply spectacular double rainbow this evening with my two daughters as witnesses. Such sights never go to waste. Perhaps those two rainbows, after a day of vicious Vancouver grey, carried Elle and Bella one step closer to their final place - together.

    My profoundest sympathies.

  17. My heart cries with you and your family. I am truly sorry for your loss. Be strong in your faith. "Trust in the Lord with all your heart and lean not on our own understanding" -- Proverbs 3:5. Your unyielding faith is a testimony.
    --Praying for you
    Krista Boyd

  18. I am so sorry to hear that your precious little one has passed away. I am thinking of you and your family.

    Jaimie (found you through Bella's Blog)

  19. I am crying as I write this. Sweet baby Elle captured my heart since day one. I will truly miss her.

    Please accept my deepest sympathy.

    Laura (Philippines)

  20. I am so sorry for you loss of your sweet baby Elle. I have been praying for her since I first heard of her story. May God wrap you in His arms and keep you close.

  21. Sweet Baby Elle...

    I will love you forever and always and eternity,

    You will always be in my heart,

    I Love you beautiful angel,

    Auntie Timea

  22. Becky,
    My heart is aching for you. I know that elle is finally at peace and free from her pain, but we will miss her forever. I love you very much and please let me know if you need anything.

  23. My heart is breaking for your family. Sweet Baby Elle we love you. Thinking of you and sending many prayers and love.

  24. I never related to bellas followers, who only knew her from the blog.
    Because I know the Ringgolds, it was so easy to miss Bella, to be heartbroken, and cry deep sobs.
    Now, I relate. I don't know you, your family. Or Elle.
    But, the tears are here, just as if I did.
    I'm only at ease knowing those butterfly babies are home, together. Free from EB.
    Prayers for all of you....and lots of love.

  25. I am speechless. My heart aches for you all. I am so sorry.

  26. I am at a loss for words. I think Chloe said it best - Elle and Bella are flying together with butterfly wings up in heaven right now.

    Many hugs to you all,
    Chicago, IL

  27. Wanted to add -
    I'm a NICU nurse, and getting to know Tripp, Jonah, Daylon, and especially Bella and Elle, all through blogs, has driven me to get together an EB protocol for my unit. Should we have a baby born with EB, we will know what to do from the start. Elle's journey is not done - she will continue to help others like me.

  28. I am so sorry for your lost. I have no words just know I am praying for your whole family. Brenda U MN

  29. Elle's sweet, short life will not be forgotten by those who were blessed to know her through your blog. Thank you for sharing her story.

    I believe with all my heart that you will be reunited with your little angel someday!

    With greatest sympathy,

    Kim (Utah)

  30. Oh. I am so sad. I am sending my thoughts and prayers to you and your family. Words fail me but prayers do not.

    Peace be with you.....Kim

  31. I'm so sorry to hear about Elle's passing. We've been thinking and praying for your family and will continue to do so.

    Julie Williams

  32. Goodbye sweet bright eyed beautiful Elle. I have followed her journey now for sometime via Bella's blog.
    Rest in peace.
    May your family stay strong and know that many people in the community are praying for you.

    Jenny, BC Canada

  33. Steve, Becky & Chloe,

    I am so so sorry for your loss. You guys were there for us when we lost Bella and I will never forget that. If there is ANYTHING we can do at all, don't hesitate to call. Even if you just want to shout or cry or anything. Unfortunately, we have something in common few others do so if you feel the need to talk at anytime, we are here. (BTW - call Tim's phone as mine is currently not working).

    I love that you were able to be with her in such a beautiful way, and that Chloe was there with you all as well. They will forever be special sisters.

    This morning, after Tim told me the news I went outside and saw a butterfly, which we don't see too many of now that it is fall but it is still warm here in Phoenix. It was a nice reminder of our beautiful butterfly girls in heaven.

    We love you! God bless.


  34. I am so very sorry for your loss. There are no adequate words. I just want you to know that even though I never met Elle, or you, I will always miss her and she will always hold a piece of my heart. Lots of prayers going up for all of you.

    I am so sorry I have never commented until now.

    With love,
    Castle Rock, CO

  35. Elle's passing is cutting deep into me just as Bella's did. I only know you all through your blog but I feel like I've known you for years. Thoughts and prayers are with you.

  36. I am so sorry to read of Elle's death - I am praying for your family.

  37. My heart goes out to you, dear Pop family. I am soo sad to hear the news. I am crying as I write this, sending you my love and prayers. Dear sweet Elle, play with sweet Bella in heaven.
    Heike Ringgold.

  38. Becky, Stephan and Chloe,
    We, as many others, only know you through your blog. We were introduced to you through Daylon's. But, as with many others, you have become engrained into our family. Many times we will think of Elle through the day and look forward to hopes of reports of a better day that she had. We worried about you and Stephan, Becky, worried about your lack of sleep and drain on your physical and emothional health. You were in our prayers every night.
    Thank you so much for sharing your last moments with her with all of us. You have let us into a very private area and you could have kept it to yourself, but one that we are greatful to share with you. Our tears flowed heavily as we read about today. Know that your family will continue to be in our prayers as you continue on.
    I believe that the younger the child is, the closer they are to remembering what they left behind and closer to the Spirit. What a blessing for Chloe to be given that inspiration and prepare her, and you, for Elle's departure.
    With much love,
    Kathie and Theresa in Utah

  39. My broken heart has become shattered....I am so very sorry. I am sobbing and aching...May God hold you so so tight and close to him. Please know that you are in my prayers...I am so very sorry.
    Nicole B (Miss Bella's friend)

  40. So sad for you and your family. I've been reading about little Elle through Daylon's blog and also followed Bella too. My heart aches for all of you! There is peace knowing she is no long in pain and suffering. Now you are all doing that. May God bless you all

  41. Be free, little butterfly.

    Praying for peace and healing for you all. My heart is broken for you.

  42. Sweet Elle. Go free darling.

    Much love to you all.

  43. Oh I am so sorry. This EB is so very cruel and horrible disease.

  44. We are so very sorry to hear and then read the news. Your words were comforting at a time when comfort is difficult to come by. We are thankful that you were able to have the last few moments together. Chloe sounds amazing and we wish you the best of luck going forward.

    Jackie and Brett
    Parents of Rafi, 3 year old RDEB, patient #8

  45. I am so very sorry for your loss. I can't imagine your grief. And the strength in your words is amazing! I do feel a bit comforted to know that Elle and Bella are together and happy and healthy, flying around with their little butterfly wings. No longer in pain. You will be in my thoughts and prayers.
    Karen in Ohio

  46. I am so sorry to read of Elle's passing. I'm not even sure how I came across your blog, but Elle's eyes hooked me from my first read--what a beautiful baby girl! May she play in Heaven with Bella, pain and bandage free. My thoughts and prayers are with your family.

    Vicki in NY

  47. I am so sad to read this. I want to thank you for sharing her story as it has changed how I look at life. My heart is truly broken and I am crying just thinking about your loss, but like you I know she is now free of pain and happily waiting until the day you join her. Chloe sounds like a fantastic little girl. Many hugs and prayers coming your way from S. Florida.

  48. I'm so sorry for your loss...
    Praying for you and Sweet Elle who is playing with Bella.
    Lots of love,

  49. Peace Be With You.
    Chloe is amazing and I got chills reading how intuitive she was around Elle.

    Chris (PEZ)
    NY, NY

  50. Dear Precious Family--
    The unity and love in your family has been a constant inspiration to me over the past several months. May God engulf you with His peace and comfort.May you feel the warmth of His loving arms around you.
    Becky-- you are a talented writer... tenderness and feelings come alive from your words... I hope you publish this story of your family's journey with your darling daughter Baby Elle.
    We'll miss you baby. You are loved by so many--
    My heart is breaking
    Faye Holmes

  51. I'm so sorry for the loss of your sweet Elle. I came to your site via the Ringgolds. I think your perecption of heaven and time is absolutley correct. And what a glorious reunion there will be when we arrive. I hope that will give you comfort during the difficult days that lie ahead. Praying for peace and healing as you go forward.

    A friend in NC

  52. Dear Pop family,

    I am so sorry Elle is not here anymore, so sad that it was time for her to go. I feel heartbroken. I wish she was still there with you, that she could have turned the corner on her way to recovery instead. She was so sweet and touched so many hearts of people who never even met her, me included.

    I wish you strength, love and support in this hard times. I will always keep hoping that there will one day be a cure for EB so no more beautiful little kids will have to leave there families too early. You gave her the best chance for a good life that you could which was very brave and unselfish.

    Alexandra in Australia

  53. I also came to your site through knowing Tim and the Ringgold family, and I am deeply saddened by the passing of your sweet Elle. She was a beautiful baby and now she is in no more pain. Will keep you and your family in my prayers.

    Houston, TX

  54. I am so sorry to hear about Elle. I came here a couple of weeks ago through Bella's blog and have been reading every day.
    She is at peace now and will watch over you until you meet again.
    Will keep you in my prayers.


  55. Sending you prayers of comfort with eyes filled with tears. Now there is no more pain for Sweet Baby Elle.

    Tina in NJ (Bella's friend)

  56. Tears are flowing and my heart is breaking for you guys, your Beautiful Baby Elle will be missed. There is comfort knowing that God is in control and the Word tells us the Holy Spirit will be our Comforter.

    I'm imagining Elle and Bella dancing together and thrilled they are no longer in pain with EB.

    I'll continue to pray for the the three of you as you figure out how to adjust to this new norm.

    I can never look at another butterfly without thinking of these beautiful children and their families who suffer with EB.

    Thank you for sharing your beautiful baby girl with me and allowing me to pray for her along this BMT journey.

    Kim M
    Waterford, MI

  57. Dear Becky, Steve and Chloe: I am so so sorry for your loss. There are no words right now to ease the pain you guys are feeling.
    Precious little Elle has earned her butterfly wings and is Pain Free and playing in Paradise with all the other EB angels.
    Please take care Pop family and know that little Elle touched so many lives. We all love her so much and will miss her terribly. I just know that Leah, and Bella were waiting for her and now becoming best friends. Love and Peace Leah's Nana

  58. My first thought this morning as I read your beautiful post about you precious daughter was what a wonderful way to go to heaven. I am heartbroken for your family, I cannot imagine what you are feeling but I will pray for you. Chloe is well beyond her years and she will help carry you threw this journey, sounds like God had already prepared her. He is working through her. Elle is dancing in heaven with Leah and Bella. You have a beautiful baby. God bless.

  59. The Lord and many through out the world weep with you. My heart is so sad. Tumble and play, Miss Elle!

    Amarillo, Texas

  60. Lifting your family up in prayer.

    Michelle in KCMO

  61. I wish there were words of comfort I could offer since I'm sorry just doesn't seem like enough. Please know that hearts are breaking around the world, and that so many thoughts and prayers are with your family and sweet baby Elle.

  62. Dear Becky, Steve, and Chloe,
    I am so sad to hear that baby Elle wasn't able to live cured of EB. You and Elle have been pioneers in stiving for a cure. Hoping and praying that your brave efforts have moved the "cure" process closer to a reaity.

    How beautifully you described your last precious moment together, as a family.

    It is comforting to know that Elle is in heaven with God, lovingly welcomed by her great-grandparents, and her new friend and playmate, Bella.

    I send love and prayers for comfort and healing for you.

    Sheila Marchetta ( Bella's Nanny)

  63. I'm so sorry for your loss. I feel so lucky to met you all in person. My daughter lauren and many other EB angels will show her all the great places in Heaven. I will pray for strength and peace as the next several days of planning an event that no parent wants to organize is hard. Please let me know if I can do anything.

    Leslie, KY

  64. Stefan and Becky and Chloe:
    We have loved Elle from birth on and are honored to have taken care of her and been near her the whole time her beautiful little soul has been on earth.
    Of course we are all heart broken as you are and miss her and know she is in Paradise in the presence of glorious God!
    The day she died, Gil and I were walking the dogs and the sunrise was one of the most magnificent I have ever seen! We just stood on corners on our walk and looked at the panorama of pinks and golds and peaches and baby blues! I have been an early riser and worker for years, enjoying sunrises thousands of times. I tell you that day was the most expansive, lovely set of colors and it covered at least three fouths of the whole sky, not just the East!
    I began to think of Elle's procedure coming up that day and what she had already been through! I knew in my heart and my daughter, Lisa, knew later on the phone this was to be the day!
    We agreed to be together and be 40 miles away from our home and dine together. Then came the news from our precious Becky and I think we were almost prepared!
    Elizabeth Cady was loved by hundreds of people and impacted so many lives!
    It has been a total honor to have been her Grandma and to have been part of her precious life!
    The shots of B and S and C with her at the end have brought both G.G. and me to 10 kleenex tissue tears! But thank you for your very able explanation of the end.
    Fly, beautiful Elle, you are at last free of pain, free of bandages, and in Paradise where the rest of us long to be in the end!
    Bless you, my precious ones!
    I am so blessed to be part of such a brave and courageous family!
    See you soon, with all our love, Grandma and G.G.

  65. I am so saddened to read this update. I have followed your blog for a while now, having come from Bella's. I cannot begin to imagine the pain in your hearts, but in my head I can see Ella running through heaven with Bella. Those two will be such good pals ... with no lines or sores or bandages.

    With a heavy heart I will be praying for your family.

  66. Mark and Linda WelshNovember 6, 2010 at 7:48 AM

    Hi Becky, Stefan and Chloe,

    Our thoughts and prayers have been with you, your family and friends, the medical team and, of course, Baby Elle thoughout this entire process and, even more so, now that Baby Elle has gone to heaven.

    We are so sorry for your loss. May God continue to give you the strength to deal with this as he has throughout this entire process.

    Bless you and your family always.

    Denis, Louise, Mark, Linda, Michael and John Welsh (Laura's family)

  67. Thank you for sharing this part of your life with us. I am so sorry and saddened. Baby Elle did more good in her lifetime that most of us will ever will. I will never look at butterflies quite the same way again. I share your pain. Your family is in my thoughts and my heart.

  68. I am so very sorry to hear about sweet Elle. She is in heaven with Bella now, pain free. My prayers are with you all today and always.

    Bella's Grandma Carolyn

  69. She is so beautiful. And always will be.

  70. I am crying with you. Deeply sorry for your loss of your sweet little daughter.

  71. Becky, Stephan and Chloe, I am so honored and proud to be your Aunt. What an amazing family you are, such strength! And your willingness to share the most difficult experience of your life with such clarity and calm was unbelievable. Future families will benefit from Sweet Baby Elle. She will always be my hero.

    Aunt LaVonne

  72. What a beautiful family. I am so so sorry for your loss.

  73. Kerri from Windham,NHNovember 6, 2010 at 8:48 AM

    I am so sorry for your loss. My heart breaks for you and your family :(

  74. You probably don't remember me, but I met you after Bella's memorial. I want to extend my deepest condolences - I've been following your story since I met you, and I'll keep praying for God's healing for your family. I live right next to RMH - email me if there's anything you need.

    "He will swallow up death forever; and the Lord GOD will wipe away tears from all faces, and the reproach of his people he will take away from all the earth, for the LORD has spoken. It will be said on that day, 'Behold, this is our God; we have waited for him, that he might save us. This is the LORD; we have waited for him; let us be glad and rejoice in his salvation" Isaiah 25:8-9

    Karen Haman

  75. I'm so very, very sorry for your loss. I will be praying that the Lord will wrap His loving arms around you to bring you peace and comfort.

  76. I am so sorry for your loss. May you find peace now and at other times when your heart aches for your sweet baby girl. I love Elle's sweet pictures, those big brown eyes are amazing and seem to know more then what she could communicate.
    Lonni Mooreland

  77. So sorry for your loss. You will see your little girl again, never forget that.

  78. My heart breaks for your loss. I learned of her passing through Tim Ringgolds blog. I had never heard about EB until baby Tripp was born. Courtney and I are from the same town. Anyway, from her blog I have found other blogs and have been praying everynight for ALL EB babies. Please know that you and your family will continue to be in my prayers. May God grant you the strength, comfort, and peace you need as you mourn the loss of your sweet angel Elle.

    Peace and Prayers,
    Ponchatoula, LA

  79. I don't even know what to say. EB kids are simply the bravest and most special kids in the world. I just could not smile through the pain the way Elle and others did each day of their lives. They are surely angels.

    I am so incredibly sad for your loss. May the peace of the Lord be with you and carry you through this difficult time.

  80. Dear Pop Family,

    I am so sorry for your loss. I cried when I read your post that Elle had died. Such a beautiful baby girl. I will continue my prayers for your families comfort during this difficult time.

    Elle and Bella are together now with Jesus playing pain free.

    Take Care,
    Amber McLaughlin, CA

  81. Carla Spradlin (VlyIndian75@msn.com)November 6, 2010 at 10:50 AM

    Dear Pop Family, I've gotten to know you thru Ella's Blog. I am so sorry for your loss. I can't imagine how difficult this must be, but yet a blessing for Elle. She is finally free from all her pain and suffering. Even though I've been a nurse, I've only run across the disease once, and it was in an adult. I never imagined it could happen to a child. It breaks my heart. I've gotta say, Bella, Daylon, and little Elle have changed my life. They have made me much aware of a devastating disease, taught me that I can love someone that I have never met, and brought me closer to God. If three little kids can do that to one person, imagine how many other people it has affected! Thank you and your family for sharing you baby girl. My thoughts and prayers go out to your family. Carla Spradlin, Portsmouth, Ohio

  82. I'm so terribly sorry for your loss. I've been following Elle's story and I read this post with tears in my eyes. Be comforted that all of her pain and suffering are over now.
    Best wishes,

  83. My heart is broken again...
    Sending my best wishes, intentions and healing prayers for your beautiful family. Thanks for sharing your journey with us.
    Baby Elle has earned her well deserved wings. She is now pain free and playing with Bella and all EB angels...fly little butterfly!

    Montevideo, Uruguay

  84. Dear Pop family,
    I am so sorry for your loss. Elle is now in Heaven with Leah and Bella, and all the other (too many)EB Angels, and they are free from their earthly pain of EB. Our thoughts and prayers are with your family. Thank you for sharing your sweet little daughter with us through your words and beautiful pictures.
    Judy & Guy Turnquist (Leah's Grandma & Grandpa)

  85. I am so sorry for your loss. Elle will be greatly missed, and forever loved.

  86. I'm so sad knowing that little Elle passed away and so sorry for your loss.

    Chloe's words were so touching and so wise.


  87. GOD Bless all of you!!! You have all been such an inspiration and amazing testament of LOVE! I am so very sorry and you will Always remain in my thoughts and prayers!!!

  88. I'm so sorry for your loss. My heart breaks for you. I'm praying that God eases your suffering and you may find peace of heart and mind.

  89. No words can describe the hurtbreaking grief I felt upon hearing of your loss..
    We will never forget you Elle,fly high

    Your in my thoughts and prayers

  90. Your family is in my thoughts.

  91. My heart is broken that another precious baby is gone. I am so very sorry for your loss. I pray that God will comfort you.

  92. I'm so sorry that you lost your beautiful baby girl. Though I only knew her through the pictures you posted, she sure looked like a sweet, happy baby! And now she has brand new skin that can't be blistered, not even by her new wings! May you find the comfort that only God can give.


  93. I have not posted here before but have been following you through Bella's blog. Please accept my deepest sympathies - I will pray for the Lord to comfort you and give you His peace.

    Laura from TX

  94. Thank you for sharing your faith and your gift of Elle. You will be in my prayers.

    - Laura, Indianapolis, IN

  95. So sorry to hear of the loss of your beautiful baby girl. I know she is no longer hurting and God is taking great care of her. I will be praying for you and your family.

  96. I am so very sorry for your loss...my prayers will be for you. Be strong...

    Sandra Coelho from Portugal

  97. My heart breaks for you, as every parent's nightmare has become a reality. I lost my 14 year old daughter to cancer 14 years ago last wk. While time helps to create a new sense of "normal", to lose a child is the worst thing in this world...but in the past 14 years, I have come to a new reality..that of how empty my life would have been without my daughter..while I have 2 younger sons, nothing and no one will take the place of my #1 daughter. Please try to focus on the positives...when you look at a picture of your Elle, think of the smile she had, the belly laugh she sounded and the joy that you experienced in that moment when she was your precious baby. I know that this world is not our final destination...we will all be reunited with our loved ones who have journeyed on before us. Your Elle might be gone from your touch, but she is thriving and so alive in your heart!!! God Bless you....anna ling pierce

  98. There are no words

  99. I am so terribly sorry for your loss. I hope that faith and time heal your pain. And know that she will never be forgotten. Thank you for sharing your journey with us.

    Upstate NY

  100. I have thought about Elle all day since reading your post this morning. I was completely heartbroken and had to read twice because I didn't want to believe it. I am so sorry for the loss of your sweet baby girl. I love looking at the pictures of her sweet smile and eyes that always looked like they were twinkling. Thank you for sharing her with all of us. We are all much richer for knowing about her story and she will not be forgotten. Your little butterfly will now soar.

    Many hugs...

    Amy in MN

  101. I'm so terribly terribly sorry for the loss of sweet baby Elle. I am however so very, very glad that she is pain free in heaven playing with Bella.

  102. "my flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

    We are all lifting you up in prayers of comfort and peace. Sweet Elle will never be forgotten and we will live each day in honor of her and Bella and the entire EB community who have sacrificed so much to find a cure.

    With love and prayers,
    kim and family
    OC, Ca

  103. I am so very sorry for your loss, Elle was a beautiful baby. I was in shock to read this today because it happened so fast :-(
    My prayers and thoughts are with you during this incredibly difficult time.
    After Bella and Elle I am so doubtful of BMT it sure seems to do more harm than good.

  104. I am so sorry for your loss...there are no words to make this time easier, but know that we are all lifting you up in prayer for strength and healing and peace. Sweet Elle is finally in peace and I know she carries you with her always, just as you take her with you wherever you go!

    The Kurz Family
    Richmond, VA

  105. I read this in complete tears this morning. Know...that as hard as it is to be without her....it was harder for her to be here with you. She is in a place that you cannot see her but if you take a moment of peace you can feel her all around you. You will forever be her Mommy, Daddy, and Sissy.


  106. I am so sorry for your loss. I am praying for your family during this difficult time.


  107. I was so sad to read that baby Elle grew her butterfly wings. I am glad that she is now pain free and peaceful, I will keep Sweet Baby Elle in my thoughts and prayers and send lots of prayers to your family.

  108. I am praying for your peace and comfort during this difficult time.

  109. The strength that got you to chose to fight for the best for her through BMT will be the strength that carries you through this difficult time.
    It is pioneers like Elle & Bella that have helped us develop treatments and their contributions will never be forgotten.

    (Bella blog follower)

  110. I'm so sorry for your loss. This is a beautiful post, and it sounds like Elle's final moments were also quite beautiful and full of love and peace. Chloe is amazing and I love how you said being here only 3 years makes her closer to the spirit world. Children understand god so fully without even trying, so wonderful. Thank you for sharing her words with us and may god bring you peace and comfort in the days ahead.

  111. So sorry Becky and Stephan.
    Elle, your sweet little girl, no longer suffers...
    Like you said "Elle is no longer on pain medicines, no lines, no tubes, no machines. Elle is out of her cocoon of bandages and has flown to heaven with butterfly wings.
    She has earned her wings bravely facing such a tall challenge for a little girl...
    Take care and best regards
    Sam-Ottawa/ Canada

    I run a virtual medical miracle network to help poor Vietnamese children afflicted with weird diseases. Recently 2 cases of EB made the news in Vietnam. We are working with the National Hospital of Pediatrics in Hanoi Vietnam to help EB cases... still untreatable. The hospital is re-calling all previous cases that were sent home because the hospital could not do anything to help. Using STC with UMN procedure (Wagner and Tolar) is being explored.
    Best and good luck to all RB children and their loving parents in the world.

  112. Praying for you guys and loving you from here, in NC. May God grant you HIS peace and strength.

    Patrice (mom to Jonah, 20 mths, JEB)
    Winston-Salem, NC

  113. I have to tell you what just happened. I was reading the posts from everyone and feeling very sad and thinking about you. My granddaughter came up to me to snuggle. I hugged her close and prayed for the angels to watch over her. She hopped down and started singing "butterflies, butterflies, over and over. She didn't see or hear anything to do with butterflies at the time or any time today. Why did she start singing about them then? Children are so close to the spiritual world! Pray for us sweet Elle!

  114. I came to your blog from Bella's and have been checking on Elle every day. I have never seen such strength as I have witnessed in your two families.

    I am so sad that another sweet baby is gone from this earth. My prayers are with you.

    Karen Steiner
    Denver, Colorado

  115. I am sad with you and my heart is broken. I am Jonah Williams' great aunt and have a special place in my heart for all the EB babies. Our entire family has you in our thoughts and prayers ...

  116. I was so sorry to read this today. my heart breaks for your family to lose sweet baby Elle. But, i realize she has no more pain, but it can't make the parting easier. ya'll are such a wonderful inspiration. hugs from louisiana

  117. I am so very, very sad for your loss. I don't know what else to say. I don't know you, I have just been following the "EB blogs" and heard about Elle's passing. So very sorry for you.

    St. Peter, MN

  118. I don't really know what to say but I am so sorry for your loss! I was also captured by her beautiful eyes and sweet smile. Praying for your family!

    Becky (Texas)

  119. I have been following Elle since Bella's blog, I went to school with Tim and have been following the EB kiddos. I am so sad about Elle and wanted to send you my hugs, love and prayers from California. She is flying with Bella now.

  120. I have been thinking of Elle all day. She's been on my mind since I read about her passing this morning. I already posted before but I needed to let you know that you have been in my thoughts and prayers all day.

    Elle was an inspiration. She was so strong and fought hard. I'm so glad that you were all able to finally hold her again and bathe her and dress her up. What a precious little Dolly! No words can even begin to say how sorry I am for your loss. Lots of ((hugs)).

    Take Care,
    Amber McLaughlin, CA

  121. Sending you prayer's and peace from California. I can't begin to imagine your loss of your beautiful Elle. What a sweet angel you have watching over you... and darling Bella was there to welcome her. God Bless you and your family


  122. I am so sorry for your loss. May your heart and soul find peace and comfort. Beautiful Sweet Baby Elle will not be forgotten.

    Schererville, IN

  123. Dear Pop Family:

    I am so sorry for your loss; truly so very sorry. There are no words, but I did want to make a comment to let you know Elle will not be forgotten. You wrote such a brave and courageous post about your beautiful angel. She will always be remembered and will help find a cure for EB.

  124. I am so sorry for your loss. My heart is breaking for you. I know Elle is in a better place and will be watching over you will Love.
    From the bottom of my heart I send all my love, Barb Dow

  125. I am so sorry for your loss. I didn't get to officially meet you while I was at the RMH with my son. My heart breaks for you.

    Kim and Joseph Parthenais from Rochester NY

  126. I'm so sorry. I don't know the words to say to comfort you... please know that we are thinking and praying for your family!
    Winston-Salem NC
    Jason & Lacy

  127. Your precious daughter has given us all a gift about life, hope, belief and courage to help us all carry on in this world. She has given your family a deepened and profound gift of compassion, strength, love and courage by brining you all together in such a tight and loving bond in her fight to carry on. She has bound your family together with love that no one will be able to break. Such a profound and powerful gift for one so young, so fragile and so innocent to teach us all so many wonderful and poignant lessons to carry us all through our journeys. I can not imagine, even for a brief moment the loss and empty hole she has left in your hearts. Look back at the gift she has given to you and I believe she will instantly put a smile back into your hearts.

    God Bless

    Craig Pack

  128. I'm sorry for your families loss...baby elle is an inspiration and still lives in the hearts of many!!!

  129. Our thoughts and prayers are with your family at this time. Thank you for sharing your daughter's story with us. Elle is absolutely beautiful!

  130. So very shocked and sorry to read this post today after being away for a few days.

    My thoughts and prayers go out to you all. May the Comforter comfort your souls.

    Karen in Canada

  131. I am so sorry for your loss. I pray that God will continue to sustain you and help you find comfort and peace during this most difficult time.

  132. Becky and Steve,

    We honored Elle this morning in church along with all of the other saints that have left us this year. My son, Alexander, has been so affected by Elle's story. It was very hard to share the news of his passing with her--he sobbed for an hour and had so many questions. Without our faith I would have had no idea how to answer his questions. But know that she is in a better place I told him how it was so hard for us who miss her, but for Elle she is happy, and free, and no longer in pain. I continue to pray for you and for Chloe. She is wise beyond her years. I hope you can feel the support for St. John's and we look forward to welcoming you back into supportive arms.

    Kim Hendricks

  133. Sending prayers for healing and peace from Arizona

  134. No more pain, no more tears, just dancing with Jesus and happy laughter. Prayers for your journey, tears for your pain. I am so sorry.

  135. I've come back to this site several times in such shock, wondering if it is true.. It feels like a dream and it just isn't true. But sadly enough it is. What a heartbreaking loss. The only thing that brings me joy in this occasion is that she is now free of pain, sores, and laughing and running free of all those bandages that held her so preciously together for so many months. You will be missed Sweet Elle, you will be missed. Fly HIGH ~Sweet Angel~ Fly HIGH! For you are loved and missed...

  136. May the Lord wrap his loving arms around you as you go through this very hard time in your life. My Condolences to you and your family!

  137. My prayers are with your family. May the Lord Jesus comfort you now and give you peace.


  138. So very sorry for your loss. What a journey this has been and what a journey yet to come. Baby Elle will be missed. You are in my thoughts.

  139. I am so sorry! May you meet again in a better place!

  140. Dear Pop family,
    So sorry to hear about your loss of sweet baby Elle. I found out from Tim Ringgold's blog. Your are all in our thoughts and prayers.
    Melody and family from California

  141. I'm praying for your family at this very difficult time. May God comfort your hearts as only He can.

  142. You all are in our thoughts and prayers. May God grant you the peace and comfort that Elle now enjoys. As an EB family, THANK YOU for all you have done to further research into a cure for this horrible condition. Elle is a hero - sacrificing all she had for the betterment of many. God bless you. God bless Beautiful Baby Elle.

    The Provost Family
    Palatine, IL

  143. We are praying for your family in this difficult time and you are in our thoughts and prayers. May God give you peace, comfort and strength during this difficult time. Baby Elle is in God's hands and he is giving her comfort, peace and love, She is in a better place and not suffering anymore. God loves the little children. These are the most precious gifts and blessings. Sorry for the loss of your beautiful daughter. She will always be in your thoughts and hearts. Mothers hold their childrens hands for awhile and their hearts forever. This is the hardest thing to lose a child. We lost a baby girl 34 years ago @ 13 days old, and she is always in our thoughts and hearts and we know someday we will rejoin her in heaven and oh what a beautiful day this will be. We know Families can be together forever thru all eternity. May God Bless All of You qnd be by your side thru all of this. Take Care. We Love You.

    Myrna & Dwight CA

  144. Becky:
    You asked for Bible verses for the hospital memorial.
    Acts 2:26
    "My heart is glad and my heart rejoices: my body will also live in hope, because you will not abandon me to the grave, nor will you let your Holy one see decay. You have made known to me the paths of life: you will fill me with joy in your presence."
    Also John 14:1-6

    "Do not let your hearts be troubled, trust in God, trust also in me. In my father's house there are many rooms. If it were not so I would have told you. I am going there to prepare a place for you, I will come back and take you with me that you also may be where I am. You know the place where I am going." Ma

  145. Patrick Berkery, CANovember 8, 2010 at 8:18 AM

    Dear Pop Family,

    I'm deeply saddened for your loss. My thoughts and prayers are with you.

  146. Becky:
    Sorry not enough room with last comment.
    1Corinthians 2:9-10
    " No eye has seen,no ear has heard, no mind conceived what God has prepared for those who love him, but God has revealed it to us by His spirit.
    I hope this helps you and many of the Psalms are beautiful also, many of them David praising and loving the Lord.
    God bless you and Stefan and Chloe during this sad time. I am so glad the strong aunties are there with you, Auntie Ginger and Auntie Lisa. Little Destiny and Chloe should comfort you all also.
    I spoke a long time with Etelca, and she helped me very much.
    God is with us, He never leaves us.
    We all love you and pray for your peace and acceptance at this hard time. Ma

  147. I am so sorry for your loss. There are no words... I will keep you family in my prayers.

  148. I have been reading your blog for a while now, and I didn't get a chance to login over the weekend. I'm heartbroken... I do not know your family, but my heart is broken for Baby Elle. Thank you for sharing her with me. She is such a sweet and beautiful baby girl. Much love from Utah.

  149. Your sweet baby Elle is holding hands with Jesus now. Prayers for you and your family during this difficult time.


  150. How beautiful! My heart is so sad for your loss, but I am so glad that you seem to have a good outlook on it. She is in heaven and is in no pain anymore! My thought and prayers are with you during this difficult time. She was truely a beautiful angel on Earth! God Bless her and keep her.

  151. So very sorry for your loss... She is free and with loved ones for sure! God is good~ He will take special care of your little Elle. Praying for you in Ohio~

  152. I am so saddened to hear of the loss of your beautiful daughter. Your strength and faith is so inspiring. That while facing such a tragic loss you stand unafraid. It's amazing.

    I believe Elle is with Jesus too. She's got her angel wings now.

    I wish you and yours peace in your time of grieving.

  153. I was so sad to hear this morning that Elle had passed. I pray for your family and for the staff in the BMT unit at the U. My heart is breaking for all of you!

  154. Such a sweet face such a sweet angel, so sorry for you loss. Praying for comfort for all your family during this time.

  155. I am so sorry.
    I am so glad that your little lady is free of the tubes and pain, and most of all E.B.
    She has gone home, but she is not forgotten.


  156. Dear Becky, Stefan, and Chloe - I'm so sorry that I haven't posted anything before, but we have been following Sweet Baby Elle since that day so long ago in the play area, August 7. I keep picturing her as she was that day - sleeping so peacefully with those long dark eyelashes and pretty pink cheeks. I wish I had words to express our sorrow for you. Hold tight to each other and know she will always be with you. Prayers, Torie, Cheryl, and Cathy

  157. I am so sorry for your loss.
    I have only been reading for a short while via Bella and the Ringgolds.
    Elle was an amazingly beautiful, joyful little soul in life - I can only imagine how radiant she is now, perfectly healed and whole!
    How we grieve for our darling babies that we have lost to EB in the last year. She will live on in the hearts of family, friends, and strangers alike.
    Strength and love from California.

    Kirstin Stenberg

  158. I am praying for your family. We lost our precious Emma to this same horrible illness. I am glad to know that Emma and Elle are playing at the feet of Jesus!!!!! I will continue to pray for comfort in the coming days!!!!

  159. Sweet and innocent Elle is forever remembered as she fought a valiant fight. Her young body just could not fight anymore!! I will pray for her family to have the strength to go on without her. She will forever be in your heart!! You were wonderful parents!! I am praying for Tripp also!!

  160. What a beautiful baby, and she was given the most caring family to love her.. You guys inspire me with your faith!

  161. Please know our prayers and thoughts are with you. My 10 year old daughter, Eleanor and I have been following Jonah since he was only a few days old, and through him found all the other eb babies. She proudly keeps our "Jonah" magnets clean and on display on our cars at all times. Eleanor was devastated when Bella died and to have Elle follow so soon has just broken our hearts. She and I will be running in our local 5K on Thanksgiving morning with our eb t-shirts on in honor of Jonah, Tripp, Daylon and Bella, with a special butterfly pinned on for precious Elle. Eleanor asked me, "Mama, why is the bmt so hard on the babies, and if it makes them so sick, why do they have to do it?". I explained to her that you, the Ringgolds, and the Edlings had all spent many many hours in prayer and research before taking that giant and scary leap, but that you all felt it was your babies' best chance at a healthy and normal life, even though you knew it may not work out as you hoped and prayed. Eleanor was just blown away at your faith, hope, and bravery. Please know that Elle has impacted at least one little girl in a huge way. Eleanor has such a heart for all these eb babies, and follows you all diligently. I know that doing so will help her to grow into a better person, with love and a will to help those in need. So, many thanks for your honesty and transparency when blogging. Elle's legacy will last for many lifetimes. Prayers and love going out to you, and especially my little same name sweet girl.

    Elle Auvil
    Williamsburg, VA

  162. Dear Pop Family,

    My heart aches for you. I am so sorry for your loss. I have been following you since Elle's admission to BMT, although in silence (through Bella's blog).

    Thank you for sharing Elle's story. Thank you for sharing those precious final moments with your beautiful daughter. Be sure she will never be forgotten.

    I just can picture Elle and Bella playing and running in Heaven, free as butterflies.
    You and Chloe will always have an angel caring for you.

    Your family is in my most truthful prayers,
    Carla, from Portugal
    Mother of Beatriz (EB free) and Matilde (EB child)

  163. So sad to hear the news. You all are in my prayers.


  164. I'm so sorry for your loss. Your family will be in my prayers.

  165. I have kept you all in my prayers. I am so sorry for your family's loss. She looked like such a precious child, I cannot imagine what you are going through. My your faith stay strong and bring you peace!
    Much love & sympathy,
    Amber, IA

  166. I am so sorry. I came to your page from Bella's the day Bella died and was hoping and praying for your little girl. She is such a sweetie and thank you so much for sharing with us. The picture of Chloe kissing Elle goodbye was the sweetest picture in the world and tore me to pieces at the same time. Many thoughts and tears your way. My dad recently died in August suddenly from a heart attack at 56, and one of his greatest loves in the world was his grandkids, mostly his granddaughters (only 3 out of 10 kids). I hope this isn't innappropriate, but I really hope he gets to meet Bella and Elle. He would just love them to pieces.


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