When Reading resident Ryan Morgan’s six-year-old son Jonas was born with Williams Syndrome, a rare genetic condition affecting 1 in 10,000 people, Morgan and his family found the Williams Syndrome Association (WSA) to be a lifeline.
“We are so fortunate to have access to resources like the WSA because they have helped connect us with others and provide valuable information that has helped us to enrich Jonas’s life and educated us about his medical needs. We’ve participated in some of the networking events, and as Jonas has gotten older, those connections we’ve made and classes we’ve taken through the Williams Syndrome Association have helped us learn how to work through the Individualized Education Plan (IEP) process,” said Morgan.
May marks Williams Syndrome Awareness Month, and having received so much through the WSA, Morgan decided he wanted to give something back. On May 22, Morgan will be walking from his house in Reading to Boston Children’s Hospital (where Jonas receives the majority of his primary care) to raise awareness for those with Williams Syndrome and raise money for the WSA.
“I am walking for him, my family, all those affected by this condition, and all of Jonas’s expert caregivers at Boston Children’s Hospital,” said Morgan.
The idea of the walking in order to raise awareness came to Morgan as he sought to leave behind the stationary lifestyle of the COVID-19 pandemic.
“I’ve recently been getting myself out of the COVID condition, where we’ve all been sitting down, and I started taking up walking. And, I knew I needed a goal, and this was something I had previously thought about doing, and, and it’s for a good cause, and obviously something we’re very strongly connected to,” said Morgan.
Morgan decided to start from his house in Reading in order to help raise awareness of the incredible caregivers in the Reading Public Schools that Morgan and his family have interacted with as Jonas has begun his education.
“The community here in Reading has been very, very helpful. We’ve connected with other families through the Understanding Disabilities organization in Reading. Our children are currently going through RISE, and the RISE program here in Reading helps children with disabilities access the curriculum. We’ve established great relationships with Reading Public Schools and the RISE program, and that’s been a great experience. And so that was something that I felt strongly should be celebrated too,” said Morgan.
Morgan will begin his walk at 8 am on May 22 and will be walking down Main Street and onto Route 28. Residents who are interested in donating to Morgan’s fundraiser for the WSA can donate here, or they can support Morgan in person as he makes his walk through the town on May 22 (view Route here).
“It’s not just about me walking, but it’s about bringing awareness to the fact that we have a great community here and that we really work hard to include everyone regardless of their ability, regardless of their condition. And really it — it means a lot,” said Morgan.
