The story of Jarrah
On February 19th 2021 , our world turned upside down , as our beautiful son Jarrah received a devastating diagnosis.
“Ataxia Telangiectasia” also know as “A-T” which is a very rare and incurable neurodegenerative disease.
The symptoms of “A-T “ are described as the worst parts of cerebral palsy , cystic fibrosis and muscular dystrophy with a high risk of cancer and Lung disease .
A-T is a severe progressive degenerative condition which affects a Childs central nervous system and makes their cells very susceptible to damage , over time this will cause muscles to weaken to the point most kids will be in a wheelchair by the age of 10. , and only live until early adulthood.
Hearing that this disease will at some point take our son was the hardest part to hear, but we have chosen to fight for Jarrah and if we can’t save him from this horrible disease , we hope to use this and raise as much awareness as we possibly can , to hopefully one day save another family from feeling the pain and heartbreak we have felt everyday since Jarrah was Diagnosed.