Jaela was born with Mucopolysaccharidosis (MPS) 1 also known as Hurler syndrome , a rare genetic disorder that affects many body systems that lead to organ damage. It is caused by a mutation in the gene. She was diagnosed when she was 1 year old. She has faced so much at a young age from bone marrow to chemo. She still has a tough road ahead of her but with the love and support from her family and friends Jaela will makeget through this! Jaela is now 10 years old and is a happy kid who loves to dance and sing.
Jaela currently receives a growth hormone daily. She had knee and ankle surgery on May 1st 2019. This surgery was done in hopes to help straighten her knees and ankles. When Jaela walks her knees hit each other so long walks are extremely uncomfortable. Jaela is finishing up elementary school and will start middle school in August.
We are trying to spread the word on this incurable disease please feel free to share our page to bring awareness to MPS.
Shari Nicholas