Sam's Story - Living with a Rare Disease

Meet Sam 💙 He’s a bubbly, social and playful four-year-old boy, but for his parents it has been a long and heart-breaking journey to reach a point where Sam is doing so well. Sam was born with an extremely rare condition called Mucopolysaccharidosis (MPS1), a genetic disorder that leads to organ damage. There is no cure, but enzyme infusions and bone marrow transplant help slow disease progression. “My heart sank, it was just pure heartbreak. Getting told that your son has a condition where they normally don’t survive and you had to do something so high risk, it’s pretty scary” - Sam’s Mum, Bibiana. Sam’s condition is extremely rare, but he is not alone. More than 63,000 West Australian children are living with a rare disease, and they need your support. Your donation this tax time will help fund research and care that is transforming the lives of WA children and their families. Join the fight. Donate now: https://bit.ly/3FwiktV