Very soon you’ll be able to read about Rafi’s journey through her stem cell transplant. It’s our hope that the transplant will result in a cure for her epidermolysis bullosa. Two years ago, she was diagnosed with Recessive Dystrophic Epidermolysis Bullosa, Hallopeau-Siemens. It’s been a long two years.
Rafi will be the 8th child to undergo the stem cell tranplant at the University of Minnesota under the care of Dr. John Wagner and Dr. Jakub Tolar and their team. Rafaella, I believe, is the second child to have an unrelated donor and the second to use umbilical cord blood as a source for the stem cells. We found a great match (5/6) and there is a high cell count in the cord blood. Both factors are good news.
Rafaella is the 1st child, however, to undergo the new protocol which, if all goes as planned, should allow her to heal faster, tolerate the chemotherapy regimen better and hopefully rebound quicker. We are hopeful. This is now the only FDA approved trial for Epidermolysis Bullosa.
Once the transplant starts, potentially at the end of January 2010, we will write everyday about what is going on, how she is doing and provide as much medical information as possible. We had a million questions about this treatment and we hope to be able to give you the information you want. We feel that it is our responsibility to do this and we will report the good and the bad.
This Tuesday, January 5, Rafi will have her Hickman line and gtube surgically inserted, as well as have her first set of skin biopsies taken. We should start the transplant about 3 weeks after.
We want to thank the previous families who have been so willing to share their experiences as they went through this journey. Their willingness to share everything has been inspirational to us.
In the meantime, you can see what Rafaella is like now by going to YouTube.com and searching for UWSGURU. Three recent videos of Rafaella will be listed. She is a wonderful child, and we hope you will enjoy the videos.
If you want to receive an email when the site goes live, email me at brettkope@gmail.com
Brett
father to Rafaella, 2 year old RDEB-HS
Jackie and Brett,
I got this website through Emily and want you to know that you are always in my thoughts. I hope that after all the pain and anxiety and the courage you both have shown, Rafi is the happy well little girl we all wish her to be.
Good luck to all of you
Love, Dorothy Klein
Jackie,Brett and Rafi,
Jamie gave me this website and I felt very compelled through my relationship with all of you to be in touch. I truly belb
believe that you are all so very brave in taking on this enormous decision, but wouldn’t most of us who love our children and grandchildren want to do anything possible to make the “booboos” go away. You not only have my full support as a nurse involved with Rafi and her care but you also have my constant thoughts and prayers as your journey continues. Just wanted to let you know that I often think about all of you and my NYC visits are not the same without a visit to you!
Love and prayers,
Minda
Dearest Rafi, Jackie and Brett,
Pop and I are here for the three of you. We LOVE you so much and can’t wait to see you. The highlight of my day is when I get to talk with you about strawberry ice-cream and when you tell me a story about the balloons going up and down. I can’t wait to Skype with you and see you this weekend. I am so lucky to be your aunt, your mommy’s sister and your daddy’s sister in law.
Much love to you three!
Emy
We have a 2 year old granddaughter, Ella, with RDEB and are hopefully following Rafi’s progress. Our prayers are with you, the doctors, and Rafi.
Gale Alexander
Just want to say hello from Minneapolis and if you aren’t here yet, bring warm clothes, we are
very cold right now and probably will be for a while yet. I am not involved or related to EB in any way, but have been following the MN transplants with fascination. I had heard about EB and how hard it was on the
children, so was so happy to see someone trying to find a cure for it. The actual process is tough, but
these kids are AMAZING! What an inspiration! Anyway, it is wonderful for those of you going through this
process to be so open and give SO much info..I imagine it is a fabulous gift to other families considering
this treatment and it has been a big eye opener to myself and others just to hear about the disease and the
children who are going through it. I hope it brings more awareness. Anyway, I am a police & fire dispatcher for Minneapolis and I have a daughter who is a student at the U of M and who also works for the College of Pharmacy
so we are in the area of the hospital frequently. I know you will have a lot of support through the BMT
program (I hope to some day volunteer for Care Partners or for the Ronald Mcdonald house, but for now my crazy
schedule gets in the way), but if there is anything at all that I can do to help you, please feel free to call
or email. Meanwhile, know there are MN prayers already in the pipeline for your family.
Robin Jones
robin2821@aol.com
robin.jones@ci.minneapolis.mn.us
612-226-4985
Our 2 year old granddaughter, ELLA, also has RDEB. I will prayerfully and hopefully follow Rafi’s journey through this transplant journey. Thank you for sharing this experience with us.
Your precious little daughter will be in my thoughts and prayers today. (I came here through Samantha’s Caring Bridge site.) I am sure you already know that your daughter’s name means, “The one Who God has healed”. Just know that I will be praying for her.
Rafaella,
Your journey through life began just a few short years ago. EB has made it has made it an exceptionally challenging one. Ahead of you lie many unknowns. Know that those who you are now turning to are dedicated to providing their best. Those of us who have preceded you on 5D will think of you often and know of your trials. Dark days are ahead and we will be there for you. Further down life’s road are better days with stronger skin and less bandaging. Improvement will come, I see it daily. Fallyn is now at day +198 and the changes have been dramatic. Perhaps I will have the privilege of meeting you next week. We are coming back to UMMC-Fairview on 1-10-10 for Fallyn’s 6month check-up. Stay warm and stay positive, both will prove difficult but surmountable challenges in the weeks ahead.
Frank P. McNamara
Rafaella Sam and I will be right here to lend an ear, or a voice or whatever you may need as you go through your journey. We are so excited for you, and more excited that you will soon be enjoying the start of a new life. Your mommy and daddy are very special people to share your story with all of the world. Your EB family out there will be praying for you and cheering you on…and The Prayer Warriors will keep you in constant prayers. Sam and I and our whole family will be right here no matter what time of day or night if your mommy and daddy should need anything. You are going to do great, after all the number *8* is a very luckey number! God Bless you sweet child, Love & peace to your family
We can’t wait for all the good news to come!!!
HUGS
Marybeth & Sam Sheridan (#7)