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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……..
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Our hope is that the stem cell transplant will change Rafi's destiny. We strongly believe the cost of doing nothing is too great and success is in the doing.....
Congrats on the six month milestone, guys. What an insane, incredible, gut wrenching journey. So much has been thrown at you, and time and again our girl(s) come through. Oh, and Brett, too. Woohoo!! Go Roxie Go! Ditto for Jackie. So glad you are feeling better.
Playdate in October!
Love,
Heather
Woo Hoo!!!!! I’m so happy that you guys will be back in NYC soon! Look forward to seeing the little rock star again and having playdates with Brandon!
Hi Brett, Jackie, and Rafi!
I just wanted to let you guys know that I think of you guys and pray for you every day! Never big on online communication like this, but just wanted you guys to know how much I care! Rafi, your cousins, Nate, Ava, and Aiden miss you! We want you to get well and come home!!
Jackie, so sorry you have had such a rough time with your own health-please call if you need ANYTHING!!
Love
Leah
Hi Brett: Just checking in to see how Rafi is doing. Boy oh boy there is always something with this EB isn’t there. Will be praying for her feet to get better. Hang in there guys, you are doing so well. Hope Jackie is doing okay too. Keep us posted please. Take care. Love Leah’s Nana
Great picture and even better news. Yaaay!
Love the picture and the uptick in good news!
I am so happy that she is doing great. She looks adorable reading the magazine, but why football? I was hoping that Rafi was more a baseball fan. She really is impressive and I admire you all so much. Give Rafi a hug and kiss for me. Love Leah’s Nana
OK well glad to hear she is doing great!!! The 2′s are nothing, lol wait till she’s 3, than she is going to tell you off for giving her a “sports mag” to read… DUHHH
Seriously we are breathing much easier knowing you all are doing better…and Rafi of course.
Thinking and praying for you guys always
HUGS
Marybeth & Sam
OMG Rafi is a big girl already! So adorable.
The only update I needed to read: she’s doing great.
Hallaleulia!
Xoxo hope
Brett and Jackie -
I’m sorry for all you and Rafi have been going through. My prayers are with all of you.
Sandi
Hi Rafi Brett & Jackie,
You have me praying like my mother tried to get me to for 57 years. My love to you all and a special hug to Rafi. Oh Brett Please write a suspense novel and make a gazillion dollars.
love,John
So glad to read the wonderful news… we’ve been praying for your brave little girl. Thanks for the update!
Hey you three, thinking of you and missing you! Hoping you’re doing well and maybe even back home again? Love you, hope
Praise God! What wonderful news! What a relief! I will keep you all in my thoughts and prayers. Hang in there. Rafi, you are such a brave little girl.
Oh I am so relieved about the biopsy results! I cannot imagine the level of deep exhaustion you all have by this point, but Rafi keeps hanging in there! You are all in my thoughts. Love, cousin Katherine
Awesomeness!!!!! Aw, what a brave little girl. Good to hear from you!
I am thankful for the very end of your most recent post. Thinking of you and your family Brett.
Mama MIA!!!! What a rollercoaster! Will she ever be out of harms way? Is there a point in this whole transplant journey where these surprises WON’T pop up? Please tell me there is a time frame to this madness, because while I LOVE rollercoaster, I HATE this one!!!!
We would expect no less from Miss Kopelan at this point.
I am speechless. I really don’t know how you guys deal with all this stress. Thank God that she does not have lymphoma and it was just that nasty virus causing all the problems. Prayers are coming your way for your awesome Rafi. Hoping Rafi starts to feel so much better and starts playing that guitar again. Take care guys and give Rafi a hug and kiss for me. God Bless. Love Leah’s Nana
I have tears in my eyes, and I don’t even know your daughter! What wonderful news!!
Thank you, God. My heart was thumping. I’m so glad it’s not lymphoma. Praying for healing of the EBV and that you get to go home soon. She is such a fighter! Go Rafi!
Thank god thank god thank god. I didn’t realize it was THAT kind of biopsy from jackies email on my bd. Does this amazing news mean you’ll be heading home soon? And what treatment if any does she need to get the ebv under control? Meanwhile great job watching out for Rafi around that surgery. You guys are lions. Seriously. You roar.
Love you, hope
I don’t remember ever commenting before, but I do pray for Rafi regularly. She is an adorable little girl that amazes me with her sweet sprit and sparkling personality!
I am praying that the BMT is totally successful and brings relief from this horrible EB discease – this BMT is quite the roller coaster and such a day by day/hour by hour/minute by minute dance.
I am sending prayers of thanksgiving that the lymph nodes came back clear!!! Also so thankful she spiked that fever and you were diligent about having her admitted. Your forsight was wonderful given that she was going to have the reaction to the 1st dose given.
Continuing to pray and watch for your updates.
Hey guys – just read the latest update – I don’t know how you guys do it – Rafi is amazing….I am counting my lucky stars that it is NOT lymphoma and breathing a HUGE sigh of relief for you. Let’s hope this is the last major complication and that she kicks this epstein barr virus to the curb faster than anything. Much love, B
dearest rafi girl. you make me feel small and big all at the same time. stay strong super girl – your spirit insprires me.
Hello Jackie and Brett:
Just spoke to Mort who told me that Rafi needs to have a treatment for a problem that has developed. I am hoping that this latest set back will be just another hurdle to get over until Rafi is back on the road to recovery again. Know that you are never out of my thoughts and prayers.
Sending you much love,
Helen
Praying for all the EB children. I found Rafi’s website while reading Jonah’s. I am amazed by the strength these children have, and the dedication you have to your child to help them get the best care possible. I will continue to pray for your daughter, and hope you (and the other EB’ers) get your miracle cure very soon.
Just wanted to say hello. We have been really busy with Day Camp. 80-90 kids a day. Insane. However, not a day goes by that Peter & I don’t think of you three. We miss you more than you could ever know. Hang in there. Sending Hugs & Kisses your way. XOXO Wendy
It’s been so long w/o an update!! I miss them. We’re thinking about you guys and wondering how it’s going. Hope you had a Happy 4th.
There was a lot of good news in your latest post. Rafi, you are a strong little girl! So happy to see she is doing well and sleeping well! Good luck with potty training! We found that the “Elmo’s Potty Time DVD” was a huge hit and a big help (mommy doesn’t enjoy it so much
Sending you all strength and love…you’re always in our thoughts.
The Pedrazzis
Hey you three! I love you! Thinking of you as always and hoping your next update will hold so many pieces of good news. Sending heaps of love and hopes for boundless progress.
Xoxoxo hope
In a way, I’m glad I haven’t checked back since the time you had such positive news. Now it’s becoming positive again, so I, for one, am cheered. I hope you are as well. I do think of each of you quite often, in fact, every time I leave my apartment and miss seeing the three of you coming or going. You are, of course, much in my thoughts for steady progress.
Again, I don’t know how you are all still standing. I thought of you so much today, because Tyler (now 9 months old) has coxsaki virus, with open sores in his throat. My little zen baby who never really cries screamed all day. My nerves are shot and I’ve been crying for him all day. All the while you guys were in my heart, knowing what you’re going through far exceeds all this. But every emotion I felt today, I felt it not only for Tyler and myself, but for Rafi and both of you. All my love
Hi Brett and Jackie,
It’s been a while so I wanted to let you know that we think of you all the time. Just brought myself up-to-date on Rafi’s progress. Prayers continue to come your way.
Happy 4th of July.
Heather
Hello Jackie and Brett:
At last a breather for everyone and what good news it is. Enjoy the holiday week-end and give Rafi a hug and a kiss from Aunt Helen who sends everyone lots of love.
Helen
Hi Brett & Jackie:
So sorry that you guys had such a stressful few days. I am amazed at your strength and Rafi’s ability to spring right back after everything she has gone through. Hoping and praying that the ultrasound today goes well and also hoping that you guys got some much needed sleep.
Extra prayers for your precious daughter. God Bless. Love Leah’s Nana
What joy reading your news!!! What relief and then worry again then relief again and exultation!!! I hope you ALL slept well and do so again and again this week. Hell, let’s hear it for good sleep from here on out! Add to that prayer my hope for zero effusion soon and absolute zero EBV Friday. AND a shockingly fast healing of her little throat for ZERO aspiration sooner than a month. I know she’s a miracle in progress so I personally won’t be surprised to hear all these good wishes come true. It is a only a matter of time.
Welcome back home too!!! Wow!
Xoxo hope
It is great to hear you are back home and that
Rafi is in good spirits. We are thinking of you.
Love, Adam, Mary, and Audrey
Great news! Thx for the update.
Whew! Thanks, Brett.
Marjorie
Hi guys. Thinking good thoughts and sending cyber hugs your way.
Hey there friends, continuing to think of you and send positive thoughts.
Love you, hope
Just wanted to leave the daily hello and send another round of hugs. I hope things are on a safer footing by now… Thinking of you and praying for enormous strides forward.
Love, hope
I’ve been traveling for a bit and just had a chance to catch up here. I loved seeing the pictures in early June, and I’m really hoping the next time you talk about being in the woods, you’re describing a walk together in the actual forest.
Good morning you three, glad to see on fb that rafi’s been showing her tough side–I hope she has continued amazing her docs with her beautiful fighting spirit. And that today brings you ever further out of the woods.
Sending love and girl power
hope
Good morning friends, and I hope that’s how it finds you–feeling good, especially little Rafi. I’m thinking of you this morning and praying for the wise help of your medical team to help get all the unknowns taken care of — so Rafi can be better enough to sleep well and swallow well and breathe well and to resume gaining ground on EB.
Love you heaps and heaps, hope
I am hoping Rafi is tolerating room air by now, and that the coughing from drinking is less–That it is just post-op irritation… I can’t imagine how difficult it must be to tell her she can’t drink as she longs to–all while getting no sleep. This must be high on the list of hardest spells you’ve had to endure on the journey so far. I am glad the heart issue isn’t serious at this time. I hope that resolves itself too. Soon. I’m thinking of you today and every day.
Sending love and prayers for daily progress back to health, hope
Prayers for sweet baby girl, Rafi! Get better little one. Prayers for mommy and daddy too. Big cyber hugs.