Aug 3, 2022
Join us in raising awareness, funds, and support for patients with Cloves.
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Join us in raising awareness, funds, and support for patients with Cloves.
Little stressed.
We got the letter back from the doctors in Boston. They reviewed all her medical records and imaging and sent us the conclusion. They confirmed her CLOVES diagnosis. But then they mentioned that she has enlarged veins going into her spine that they need to check out so she needs a spinal MRI. And then mentioned a lot of surgical procedures that they think would be beneficial as well as debulking for her fingers. We never knew anything about her spine. Granted, from what we know, she's only the second case Seattle has seen so I know they don't see it as often, or maybe even didn't know to look. But now I'm really worried.
So excited!
National Disease Awareness Day is February 29th. We found out the National Disease United Foundation is doing an exhibit and Brandon called them and told them about Isabella. We are next in line if the current family isn't able to! I know that awareness is important, no matter what child or condition, but I'm not gonna lie, I'm kind of excited at the idea of our baby being recognized.