Wednesday, March 3, 2010

meet rafi, patient #8

I've been meaning to tell you guys about Rafaella (Rafi) who is patient #8 in the stem cell bone marrow transplants. She is two and a half and has Recessive Dystrophic Epidermolysis Bullosa. She is ten days post transplant, and is in the roughest stage of things right now. Please be in prayer for sweet Rafi.

You can follow her journey here. Click on "Daily Updates" for the latest news.

According to Rafi's site, Patient #9, McKensie, will be checking into the BMT floor on March 12th. It is an exciting (but terrifying) time in the EB World.

Please be in prayer for Rafi, McKensie, and also for Sam, who is still struggling.


Toes look good today! Praise God!!!


Redeemed1 said...

Thank you for sharing the requests, I will be in prayer!

Just Diane said...

I have been keeping up with them daily!!! As well as you and sweet BABY Jonah. I pray all good and wonderful things!

Laura A said...

YAY toes!!! Will keep praying. Thanks for the info on Rafi and Sam. I hate that my EB prayer list seems to be growing, but am glad that there's at least a glimmer of hope with BMT. (And am praying SO hard that we'll be able to rejoice with Sam when she gets through this and is healed!)

Hope you're having a great day!

Love from TX!

Emelie said...

Hi! Have they done BMT on JEB yet or is it just RDEB???


Hannah said...

Hello Mrs. Patrice!

My family and I have been following Jonah's journey since early March 2008, when I saw a link to your site from COLE's Foundation. I've appreciated your candor in sharing about Jonah and spreading awareness of EB. My dad asks at night if there has been any update on Jonah and my little brother (age 5 with Down syndrome) loves to look at the pictures of Jonah and watch the movies you post.

Recently, I was given a blog award, the Lemonade Stand award, that is given to blogs with a great attitude and/or gratefulness, and I wanted to give it to you, as my way of saying thank you for sharing your heart! I know you are really busy with Jonah, so there is no pressure attached!

Our family is praying for you, Mr. Matt and precious Jonah!

With love,

Hannah in GA

Hausers said...

Hey Patrice,
I have a question about the Stem Cell transplants. I'm silly enough to think that they get the transplant and then they are miraculously healed... but sounds like it's more of a process - and it takes time for the stem cells to, well, "stem" and grow and I guess they have to basically change and grow new skin? before Sam is deemed "healed"? What kind of time frame does all this happen?

Jonah's party was AWESOME!! The kids had a blast - I'm so thankful for all the money that was donated. I pray it pushes the research with dEBra much farther ahead than $10,000 "should" do!


Linda said...

Hi Patrice:
So glad that you mentioned Rafi in your blog. Tell everyone to check it out. Brett (Rafis Dad) has done a wonderful job on the site. He explains everything that will happen and why it has to be done. I'm sure you don't have time to explain on your blog what is going on with Rafi. Thanks again and so glad that Jonahs toes are doing better. Love you guys!! Love Leah's Nana

the-mommy-person said...

Love for Jonah!!! And continued prayers for you all.

Kim M said...

Yeah toes!!!
I have been following Sam (after you first suggested), now Rafi, and just connected yesterday with McKenzie. How brave these families are! I have been praying for them. My thought this morning was "I need to check in on the kids!". It is amazing how Jonah's live already has touched so many of our lives. Praying for you and Matt as well as Jonah! You are very brave and I see your strength even when you don't feel strong. God holds you up and love little Jonah even more than you do.
Hope your day has happy moments to cherish (the sun is shining in Michigan today - yeah!)