Navigating Uncharted Waters

Jun 20, 2015

Woburn family finds answers, quality care through the Genesis Foundation for Children and The Feingold Center

Navigating Uncharted Waters

By Meaghan Casey

Every year, 1 in 33 children is born with a physical, intellectual or genetic disorder. Michael Sawyer, now 17, was one of those statistics.

“As developmental milestones go, he was meeting them up until he was about a year old,” said his father, Richard Sawyer. “When he still wasn’t walking six months after that, we aggressively started looking for answers. It was uncharted waters for us.”

Richard and his wife, Kathleen, adopted Michael from South Korea when he was 4 months old. It was later, through genetic testing, that he was diagnosed with a genetic disorder that typically causes severe intellectual disability. Affected individuals usually have weak muscle tone, breathing and swallowing difficulties and cognitive and oral communication problems. It can also lead to heart defects—which Michael has not experienced. The disorder is caused by a chromosomal deletion of genetic material and affects approximately 1 in 10,000 people. Treatment is mainly aimed at reducing the severity of symptoms and monitoring the patient’s general health.

Early on, the family met with Dr. Murray Feingold, the founder of The Feingold Center for Children, which provides diagnosis and treatment for children born with intellectual and developmental disabilities and genetic disorders. Dr. Feingold has been treating children with genetic diseases for more than 40 years and has been on the faculty of Tufts, Harvard and Boston University medical schools.

“The biggest stress on a family is the unknown,” said Richard. “The Feingold Center minimizes that stress, and we’ll be eternally grateful for that. By getting the correct diagnosis, we were able to identify service providers that have been a benefit to Michael moving forward.”

Michael still receives his primary care from The Feingold Center at its location at Boston Children’s Hospital at Waltham, and is regularly examined and monitored for high-risk problems. Because many of the children they treat require the care of numerous specialists, the staff at the center also coordinates those appointments so that patients are seen by more than one specialist at the same visit.

“It’s given us peace of mind that he’s gotten the finest care from some of Boston’s top doctors,” said Richard.

The Genesis Foundation for Children (formerly known as the Genesis Fund) primarily funds The Feingold Center. The specialized care and coordination provided to patients with complex genetic disorders is extremely costly and not covered by insurance, which is why the funding is so essential. The center and its satellite clinics would not be able to operate without it. Funding is also given to support the foundation’s therapeutic arts and recreational programs on Cape Cod. Through 60,000 patient visits, the foundation has provided diagnosis, care and guidance to many grateful families since its inception in 1982.

 Michael is thriving as a junior at Woburn Memorial High School, where his younger brother, Benjamin, is also a student. In the school’s Transition Education Program, Michael is benefitting from functional life and activities of daily life (ADL) skill training. Accompanied by a job coach, he also works one day a week at CVS through the program’s community-based vocational training. After high school, he will continue to participate in vocational training opportunities available to the city’s young adults ages 18-22. Outside of school, he enjoys playing soccer, baseball and basketball.

“He’s definitely meeting his potential and we couldn’t be prouder,” said Richard.

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