Sadly, the typical lifespan of MPS II children is in the early teens, but we refuse to let MPS take Noah away from us. Through the miracles of God, our creator, along with doctors and scientists, we believe that Noah will be cured from this disease.

 

Noah currently see's a Speech Therapist 2 times a week, and a Physical Therapist and an Occupational Therapist once a week. He also receives Enzyme Replacement Therapy once a week, which takes 3-4 hours per session. Along with these weekly treatments, Noah makes frequent visits to the pediatrician, ENT, geneticist, cardiologist, pulmonologist, neurologist, ophthalmologist, orthopedic surgeon, and orthodontist.

 

Typical surgeries for MPS II children include:

• Recurring hernia repairs

• PE-tube implants

• Adenoidecotmy/ Tonsillectomy

• Port implants

• Carpal tunnel release

• Trigger digit release

• Hip joint arthroplasty

• Cervical stenosis

• Genu valgum (knock knee)

• Cardiac valve replacement

 

All these treatments will enhance Noah’s quality of life and slow down the progression of the disease until a cure is found.

 

Although his life is filled with treatments and doctor visits, he is still happy and playful like any other boy. Without knowledge of his medical history, you would not think he has any type of syndrome. Like any other boy, he is daring, adventurous, goofy, and loveable. We will continue to allow him to live a normal life and never hold him back from reaching his dreams.