01/22/2023
Here is some info on our second recipient Little Miss Brielle. She is a little sister to a dancer at a local studio and has been through an extraordinary amount at her little age.
She was diagnosed at 6 months old with Langerhan Cell Histiocytosis(an extremely rare cell abnormality) only like 1 in a million would get this at her age, after seeing 2 tumors on her head and and incurable skin rash. Chemo started at 7 months old with a medi port placed in her chest. After 7 months of the first round it spread. So we had to do a year of a second round, so until she was 2 and half. She has been in remission so far but still gets quarterly check ups with her oncologist at Akron Childrens in akron(an hour away) and bloodwork. X-rays are scheduled in March and yearly scans(mri) are usually in Sept. She will continue with these regular check ups for at least a couple more years because what she has is so rare there's not a lot of research on it. So there always constantly monitoring her. She is slightly developmentally delayed but I think thats mostly due to the isolation. During chemo she was not allowed around anyone except the family that she lives with and her doctors. And then there was covid during chemo and she had absolutely no immune system because not only does the chemo kill the bad Cells it also kills the good one too.
She is doing well currently but we are honored to help her family with all the medical costs to keep this little healthy
