Maddy's Chance

Her Story About Living With MPS1

Maddy Wigglesworth was diagnosed with MPS1 at the age of 11 months and received a cord blood transplant at Duke University Medical Center on August 25, 1999 at the age of 17 months. Maddy’s transplant was a success and although she continues to face many challenges, her indomitable spirit continues to inspire.

Maddy is currently in 8th grade in an inclusive setting. She receives special education services but follows (and completes) the same curriculum as her peers. This is difficult for Maddy because her vision is poor. From birth, Mucopolysaccharides collected on her corneas (in addition to other vital organs) causing extreme clouding. Unfortunately, the cord blood transplant did not halt or clear the clouding. Maddy has had two corneal transplants on her right eye resulting in a clear cornea but not improved vision. The visual deficit is a huge obstacle in Maddy’s life.

She also has orthopedic issues and, like many of the kids profiled on this website, Maddy has had numerous surgeries (23 to date) including the corneal transplants, VP shunt placement, carpal tunnel release, hip reconstruction, and knee and ankle surgery. It seems like every year there is something new to worry about. Even with her limitations, Maddy is an avid reader, loves to swim and ride horses and participates in a local children’s theater program. Maddy has many friends around the country and is a seasoned traveler. She also is beginning to act like a typical teenager. She likes to go to movies with friends, loves sleepovers and is embarrassed by her parents.

We are fortunate Maddy is still with us and are amazed by her positive outlook and cheery (some would say cheeky) attitude. Life will continue to challenge Maddy and we are sure she will continue to fight.