Chavy and her family were our last recipients of the 2020 Holiday Giveaway, submitted by her mom Bianca.
Kierce is 10 years old. At age 2 he was hospitalized for six days and that’s when they discovered he has a metabolic disease. Children’s Hospital has yet to find the exact disease and continue to do testing and he remains a mystery still. Kierce gets Metabolic Acidosis
RyLee was diagnosed at birth with VLCADD found from doing her newborn screen. We got a phone call a week or two after she was born letting us know of her diagnosis. VLCADD is a diagnosis where the body has trouble breaking down certain kinds of fats that effect energy. A serious diagnosis of VLCADD can cause muscle issues and heart issues. Our family had never heard of VLCADD before, but her team of doctors at Boston Children’s Hospital were very helpful in educating us of the disorder and all it’s possible effects.
Gabriella and her family were the winners of the Rare Disease Day Giveaway. For our first Rare Disease Day giveaway, we got over a thousand families who submitted their stories. We were able to gift Gabriella and her family their wish list!
Aiden was our Christmas wish list giveaway winner in 2019! His mother Samantha Haapala submitted their family of four and shared Aiden's journey with us.