Addison’s Fight Against Hurler Syndrome

Please consider helping Addison and her family during her fight with Hurler Syndrome (MPS I).

Addison was recently diagnosed with the most severe form of Mucopolysarcharidosis type I (MPS I), called Hurler Syndrome. Hurler syndrome is a rare, genetic disease with no cure. It’s caused by a mutation of the IDUA gene. Children with Hurler Syndrome are missing an important enzyme that breaks down sugar molecules in the body. Without this enzyme, the sugar molecules build up causing damage to bones and organs.

Although there is no cure for Hurler Syndrome, there are treatments. Addison is currently receiving Enzyme Replacement Therapy (ERT), and preparing for Chemotherapy and a Bone Marrow Transplant (BMT). Addison will be receiving her specialty care in UPMC Children’s Hospital.

Despite her challenges, Addison continues to be joyful and full of fun. She never fails to make her family and friends smile. Marissa and Chris are incredible parents who will be with Addison every step of the way.

Chris and Marissa will have to take an indefinite amount of time off of work. As we all know, medical bills can be overwhelming. It is our goal to alleviate their financial burden so they can be present with Addison throughout her fight. Anything is appreciated. If you cannot donate, please share to spread the word. Thank you!