Many of you already know us, but for those of you that don’t, we are a close-knit family from Texas.
We like going on road trips, and playing games. We’re into nature, and have a thing for iced tea. We regularly and repeatedly watch Bob’s Burgers (that show really hits the nail on the head when it
Daddy and Daughter both diagnosed with rare genetic disorder. Michael is fine for now, but Amri will be receiving a bone marrow transplant at the National Institutes of Health in Maryland. This requires a 4 month stay, beginning January 1, 2020. This is our GATA2 Deficiency Journey. Thank you for your love and support!
Tuesday, August 20, 2019
Monday, August 19, 2019
Update 1- Amri's Lymphedema
On a grocery trip, when Amri was 10, she looked down and noticed her left leg was very swollen, but did not hurt.
After visiting the pediatrician, we were sent straight to the emergency room- fearing heart failure. We
After visiting the pediatrician, we were sent straight to the emergency room- fearing heart failure. We
Our Story
August 2019. First and foremost: Amri (our 17 year old) needs a bone marrow transplant. Please don’t panic- she is “healthy” for now and has a team arranging her transplant- they even have a few donors in mind from the registry. Doctors have cleared her for school and band- she just can’t be
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