Tof1 Family Shares Daughters Rare Disease Journey To Help Others
(whnt) as a parent, you only want whats best for your child, but when things dont go as planned, it can be defeating. Thats the case for a family from madison and their daughter, whos living with an extremely rare genetic disorder. A treasure coast family is soon embarking on an epic road trip, traveling across the country to raise awareness of a rare disease. The family knows things can always take a turn. However, instead of sitting and worrying, theyre working on traveling to all 50 states to raise awareness and funds to fight the rare illness.
In our latest podcast episode, maria and matt share their emotional journey of navigating pyroxd1, a rare neuromuscular condition that affects their daughters ability to move, breathe, and fight off illness.
Rocky River family shares story of daughter's rare syndrome
