Helen

Daily Challenges

My name is Helen. I am from the Empire State (New York) where I happily work and live with my husband and my three children, Francis, Paolo and Matthew. My son, Matthew, had spinal cord surgery when he was only 17 months old and was diagnosed with a rare disease called Sly syndrome (MPS VII).

“Matthew is now 13 years old. He is loving and very sociable. He loves to spend time with family and other children. He has his own way of communicating with people, including his own language, which his family and very close friends have learned. Despite his current condition, he enjoys attending classes held at the hospital.”

Since his diagnosis, my son has resided in St. Mary’s Hospital for Children in Queens, NY, so he can get the medical attention he needs. He was allowed to spend a small amount of time with family outside the hospital during the holidays – until October of 2013. Since then, he is no longer allowed to leave the hospital due to respiratory complications.

Matthew was able to move with the support of a walker until his sickness started progressing when he was nine years old. He can no longer walk, even with the support of a walker, and now permanently uses a wheelchair. His respiratory issues have become worse, and he requires the use of a ventilator 24/7. Matthew loves to eat, but he is not allowed to eat orally, as it may cause aspiration. He is currently being fed via gastrointestinal tube.

Inspiring Others to Advocate

Kathy Sacoulas, Matthew’s first cousin, graciously created “The Matthew Evangelista Foundation” in order to educate others about this illness and hope for a cure. The Matthew Evangelista Foundation’s goals are to:

• Increase awareness of MPS VII and other rare disorders that currently have no cure
• Assist those families with members who have rare disorders via contributions that would assist them in gaining resources to help them through their disabilities
• Educate others on how to best care for a family member who has a rare disability and how to access resources
• Use Matthew’s story to inspire others to never give up and to always have hope for, and a dream of, treatments and cures