I've been meaning to get this up all weekend. I wanted to let you guys know that the EB Community has suffered another huge loss. Sweet Baby Elle went to be with Jesus this past Thursday evening. She was an 11 month old with Junctional-Herlitz EB who was undergoing the Bone Marrow Transplant. She passed away at Day +43. Please visit her blog HERE to read her story and offer her parents messages of love and hope. And please donate and raise awareness as you are called and able. We are so desperate for a cure.
4 comments:
How heartbreaking. She was truely an angel on Earth. Thank you for sharing their blog with us. My prayers are with them, and as always, Jonah as well.
I'm so sorry...looked it up this morning after Courtney posted...and just sobbed...Thanks for sharing. Prayers and love to that family.
Mostly Local Market in Lewisville is having Happy Tuesday in honor of Jonah again! Spread the word!
Love to your family.
This breaks my heart. I am praying for the Pops and also for a cure.
Praying for sweet Jonah as always, too! (And for you and Matt - hope you are both doing well!)
Love,
Laura
Hi Patrice; I am so sad about Elle. She reminded me so much of Leah, especially that smile. I had been following Elle's blog from day 1, I guess because of the JEB connection.
How much do you hate EB??? What an awful disease.
Take care and give Jonah a huge hug and kiss for me. Love you guys. Love and Peace Leah's Nana
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