All comment

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We would love for you to leave a comment for Rafi. We may not be able to get back to you as fast as we like, but we are sure you understand. Thanks……..

695 Responses to “All comment”

  1. Kim M says:

    It’s so nice to catch up on how Rafi is doing! Thank you for the update! Yeah for an active immune system and no fevers!!! So good to hear that Rafi gets to experience some “normal” stuff like camp and school!!!! Have a wonderful summer!

    I continue to pray for each one of these EB kids and their families who have gone through the BMT process to seek relief from this horrible disease. Praying God gives less pain and a better life.

    Praying from Waterford, MI
    Kim M

  2. Hey guys! I was just think of you all and wondered how you’re getting along in NY. I hope the move went well. I’m so happy to hear about Rafi’s “red line”! Red lines are sooo much greater than red polka dots! 😉 I hope you are all able to adjust quickly to life back at home and that your new doctors fall in to step with Jakub. Have a merry Christmas! Love, Jennifer

  3. Anonymous says:

    Knowing Rafi is doing well this weekend, I’m more grateful than ever now that I hear on the news about the crazy snow you guys are having! Time to come home for sure!!! After the snow plows do their thing. I’m rooting for the weatherman and the governor to buckle down and get the roads safe before Wednesday so you guys are clear to start the journey home. Sending love, Hope

  4. Diane says:

    Hey!!! So good to hear from you! pi-hi-hi-hic-tures. That was my whiny voice! So glad you guys are getting to go home. I hope her poor little feet heal very soon. Take care.

  5. Anonymous says:

    Homeward bound! What a wonderful thing to read!!! I am praying your new apt is right near mine and cannot wait to see you!!! Big kisses and hurrays!!!!! Im gonna call later today fingers crossed i catch you. Xo hope

  6. Adam says:

    We just read about your return to New York, and Rafi’s progress, and we could not be more excited for you all. We’ll be in Minneapolis from 12/20 to 12/25, so it sounds like we will just miss you. If you are still in town then, please let us know because we would love to see you. Love,
    Adam, Mary, Audrey & Ben

  7. Linda Ainsworth says:

    Hi Brett: I am so happy for you guys. Going home!!! I am thrilled for you. It sure has been a trip for you guys and I’m sure you are glad to be heading home.
    You guys are always in my prayers and always will be. So happy that Rafi has beat the odds and getting better everyday. You guys are truly blessed. Take care and keep us updated as much as you can. Give that precious daughter of yours a big hug and kiss for me. Love you guys. Love Leah’s Nana

  8. John T Smith says:

    Wow!!!, SO glad to hear the news. New York will be thrilled. It will be great to see you all!
    love,
    John

  9. Wendy Corbin says:

    HOME… best four letter word ever!!! Can’t wait. XOXO

  10. Denise says:

    Very excited about the progress and your return. I still wonder how you guys do all that you do.

  11. Katherine says:

    This is fabulous news!! The three of you are just amazing in this marathon towards Rafi’s healing! Much love, Katherine

  12. Becky says:

    I can’t even believe what I am writing… the thought of you all returning to NYC is just miraculous. We are very much looking forward to seeing you again at home. Much love, B

  13. Denise says:

    HAPPY BIRTHDAY RAFI ! Enjoy your day and have a lot of fun.

    Denise

  14. Wendy Corbin says:

    HAPPY BIRTHDAY Rafi!
    We love you and miss you so much. Can’t wait for you to come home so we can celebrate. Wishing you a GREAT day.
    XOXO
    Wendy, Peter, Max & Alex

  15. John T Smith says:

    Wow! Ge ready kids Rafi is coming and there will be some fun. Hugs to you all.Thanks for post Brett.
    XXoo, John

  16. Karen Rosenfield says:

    Wonderful! So happy to hear the good news! We hope to be on the list of germ free playdaters soon.

  17. Marjorie says:

    Wonderful news! Can we have some new pictures?

  18. Karen Griffin says:

    So exciting! I can’t wait to see Rafi and see her having fun with her friends. I will of course be certain that neither of my boys have so much as a sniffle near Rafi. Jackie I will talk to you more about this, but I want her transition back home and her interaction with kids to be as smooth and fun as possible. I want to do music classes in your home with her friends for at least 2 months. Everytime I look at the site and see what this baby has to endure I say, God I wish there was something I could do. This is a very small thing I can do and would be honored to do it, so please let me.
    All my love!
    Karen

  19. Linda Ainsworth says:

    Hi Brett: Thanks for the update. I am so happy that Rafi is doing so well. Hoping and praying that her skin continues to improve, that’s what this is all about, right? Sure hope you guys can get home sometime soon. Keep the Faith. Love you guys. Leah’s Nana

  20. beth and john says:

    Hi guys..we always love to get an update from you!! We think of Rafi often and Casey has been rooting for her the whole way!! You guys rock!

    I’m very interested in the pool salt and bleach story…If you have time to elaborate, please drop an email..as we tend to do the same thing with Casey!!
    Hugs to you all…
    John, Beth, Casey and family
    johnbeth91@aol.com

  21. Lindsay Mize says:

    What an update! Glad that everything is all taken care of now! Sounds like everyday is a better day from here on out! I can only imagine the words during that bath/bandage change though and all I can say is I’m sure glad that I wasn’t there :) Hugs to all!

  22. Donna says:

    So glad to hear that Rafi is doing better. Praying the salt baths will help her skin…I guess better late than never. Continuing to pray for her and the other EB babies/children and your families.

    Donna Tadlock
    Millbrook, AL

  23. Anonymous says:

    Wow guys. What a miracle! Really wonderful news to hear the line’s out and she’s doing so much better! Come on, smooth sailing!! The twists and turns must be exhausting. But your story is such an inspiring reminder to breathe deep when things look bad–who could have seen this outcome just around the bend! Thank goodness for all your fortitude and for your excellent medical team. I’m glad you’re staying put till the time’s right and I’m doubly glad I’ll see you in what I’m sure will seem like a blink of an eye.

    Sending lots of love, Hope

  24. Martha says:

    Hi Rafi, Jackie & Brett! Thanks for the update. Sorry you are delaying your return but sounds like it is better to be in MN with those amazing doctors, nurses and caregivers. We miss you. Hope Rafi is back on the upswing to stay! Let us know if you need anything.

  25. Hi there! It’s so great to read that Rafi is doing better once again. Like you wrote, I really hope that things will be a little bit easier for you from now on. You sure deserve that! Best regards Jenny and Rafis RDEB buddie Natalie <3

  26. Benny says:

    Hey Guys,
    Just wanted to say that we miss you. I can’t believe we have already driven there and back already and we have been home for so long. It seems like yesterday, maybe that’s because my back still hurts from the car ride. Anyway, watching the girls hug and say goodbye, (and throw tantrums) still gets me teary eyed. Can’t wait to see you again, hopefully soon. Either way, we will need to setup a Skype version of Zingo, but I’ll pass on the bees in the tree.
    Much love from NYC.
    Benny

  27. Eunice Feller says:

    ahhhhh. joys of temper tantrums. glad to hear you have enough fire in your belly to throw a good one. good for you rafi girl.

  28. Linda Ainsworth says:

    Hi Brett: I am so glad that Rafi is being a typical 2 year old and throwing tantrums, only kidding.
    How much do you hate EB? This has been a rough week for the EB community. What an awful disease.
    I still read Bella’s blog every morning. Tim has been such an inspiration to us all. Love that family and my heart is still aching for them.
    Please give Rafi and big hug and kiss for me. Take care guys. Love and Peace Leah’s Nana

  29. Marjorie says:

    Thanks, Brett! Rafi’s public wants to know.

  30. Becky says:

    Hey guys!!! Glad to hear you are on the upswing once again. We treasure the day when we won’t have to write that! We miss you tons and hope to see you soon – Lots of love – Becky

  31. Eleni says:

    Thank you for the update…I am speechless but I am giving you a hug to all of you…..

  32. You haven’t written lately, but I cling to the hope that Rafi’s latest crisis has passed.

  33. Anonymous says:

    Hey you three, just thinking of you and wanted to say hi. I hope by now you are out or nearly out of the eerra as Rafi so cutely said. And I hope the central line is squeaky clean with no need of changing it. So happy to hear about Rafi playing with other kids and having a visitor on the way. I’m picturing you at home and having fun. Xoxo always hope

  34. Hi Rafi!
    I keep checking in on you. I miss you very much in music class.
    Hoping you’ll get to come back very soon! Please take care and get better soon!
    Love,
    Mary

  35. Ben Dalton-Brush says:

    Looking forward to seeing you guys. On google maps we are only 4″ away. This should take no time at all. Minneapolis here we come. I was going to bring you some wings from Blondies, but they would probably be gone by the Holland Tunnel. However, I believe Lillie has been shoving various acorns, pine cones, leaves and who knows what else into her pockets for the past few months from the playgound, so you have that to look forward to. Let me know if you think of anything betwen here, PA, OH, IN, IL, Etc. See you soon.
    Benny

  36. Sarah Milstein says:

    Ah, I was hoping we hadn’t heard in a while as you were in the midst of moving. Sounds like a really good choice to stay, though, and I’m delighted Rafi is now at a point where she can play with other kids her age (also: where she can work the iPhone). We’re still planning a cross-country drive via Minn but don’t know our timing yet. Will keep you posted. Thinking of youse. xox

  37. Julia says:

    Love you guys so much.
    Give Rafi a little nuzzle and tell her we cannot wait to see her in a little over a week!!!
    xoxoxoxxo

  38. Diane says:

    Hello! Glad to hear from you again! I always have sweet Rafi on my mind and praying that all is well. We always keep you and your family in our prayers along with all of the other EB children. Take care!

  39. beth and john says:

    Hope you are back in New York soon….Thinking of you as always and sending prayers your way…..

  40. Linda Ainsworth says:

    Hi Brett: Thanks for the update. I was wondering if you guys had moved back to N.Y. and forgot all about us. Sorry that Rafi is still getting infections and still gets some damage to her skin. Boy oh boy, how I HATE EB.
    Take care and hang in there. Hoping all goes smoothly the next month and you really can go home. I guess you are so excited about that. Give Rafi a hug and kiss for me. Take care guys. Love Leah’s Nana

  41. Katherine Salazar-Poss says:

    Happy New Year!! May this year be particularly sweet for all of you, with more healing for Rafi, a return to New York and health and happiness for everyone. Love, Cousin Katherine

  42. Krista Boyd says:

    So very glad to hear that Rafi is progressing forward. Also nice to hear that Jackie is doing much better. It was great to see Rafi, even though briefly, when Keric & I were in MN a couple of weeks ago. It was such a whirlwind visit, but very exciting.
    Blessings,
    Krista

  43. Sarah Milstein says:

    Wow, that’s a great update. With all the challenges and valleys of the past few months, it’s really grounding to step back and get the longer view, which is so positive. Also great to hear you’re thinking about the move back to NYC! We’re planning to move back this fall, too, and we’ll be driving out during the first couple weeks of October–by way of Minneapolis. More on that as we nail it down….

  44. Marjorie says:

    October! Amazing. You should all get the Medal of Honor.

  45. Hope says:

    Oh my god you’re coming home!!! I have goosebumps. I am so happy and looking forward to seeing you. I feel so out of the loop with the developments of the past month, but I am very relieved that Jackie is nearly all better now too– and so glad Emily could come help–was j a week in the hospital?

    I also gather Rafi’s skin is expected to rebound again from this more fragile phase? Is it reasonable to hope and expect ongoing improvement for a while yet as her skin continues producing more collagen 7?

    It is so so good to read your update again Brett. Sending all 3 of you Minnesota Miracles big hugs and kisses. Wish I could help you pack.

    Xoxo Hope

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