After six long months filled with strokes, complicated brain surgeries, and lengthy hospital stays, Robin and Paul Lyons of Plainville, Mass. are happy to have their four boys playing together again.

The Lyons family’s journey began in 2003, when Robin Lyons picked up her two-year-old son Michael from a neighbors house and noticed he was acting strange.

“When I put Michael in the car, he seemed really out of it,” she recalls. “I became more concerned when I noticed both his left eye and left arm had a twitch.”

What Robin didn’t know was that Michael had suffered a stroke as a result of Moya Moya disease—a rare disorder that leads to irreversible blockage of the main blood vessels in the brain. Michael underwent surgery at a local hospital to increase blood flow to the right side of his brain and arrived home from the hospital the day before Christmas in 2003.

In April of 2004, while Michael will still undergoing therapy to aid his development following the successful operation on the right side of his brain, Paul Jr., Michael’s oldest brother, lost feeling in his left arm and his tongue while vacationing on Cape Cod. After rushing Paul Jr. to a local emergency department it was discovered that not only had he suffered a stroke similar to Michael’s, but he too had Moya Moya disease. Paul Jr. was rushed immediately to Children’s Hospital Boston where it was confirmed after a series of scans and tests that he did in fact have the same disease as his younger brother. Paul was admitted to Children’s and underwent two brain surgeries to reroute arteries that ordinarily run in the skin of the scalp of the head, and stitching them down to the brain’s surface. Over time, new blood vessels sprout from those rerouted arteries into the brain supplying it with more blood. This procedure was developed by Michael Scott, MD, director of clinical pediatric neurosurgery at Children’s, and is an adaptation of a technique that was described in medical literature many years ago.

Scott is a world-renowned expert in the treatment of the extremely rare Moya Moya disease. Over the years, he has seen over 200 patients with the disease, including 10 cases that involve siblings like the Lyons boys. People come from all over the world for his expertise. One of his first cases, over 20 years ago, was a child from Iceland who he still regularly keeps in contact with.

In June 2004, Robin thought it would be a good idea for Scott, the neurosurgeon who performed the operation on Paul Jr., to examine Michael to see how he was progressing post-surgery. In a rare twist of fate, while documents were being transferred from the hospital where Michael underwent his first surgery to Children’s, he experienced another stroke as a result of Moya Moya which left him disabled a second time. Scott successfully performed the second operation on Michael’s brain in the summer of 2004 and he is now going through therapy to help regain brain function that was lost as a result of the stroke.

“Moya Moya is a very rare condition,” says Scott. “I follow all of my patients post-surgery, some as long as 25 years, and they have all led normal lives after their surgery. I’m anticipating that is going to be the case for both Paul Jr. and Michael as well.”

Both Paul Jr. and Michael have made significant progress since their surgeries at Children’s. The Lyons’ two other children have been screened for Moya Moya since their brother’s surgeries and have had negative results. As of late, the Lyons family has only positive news to report. During their most recent visit, Scott cleared Paul Jr. to play all sports. This news is a promising next step for the Lyons family, after having been through so much within the last few years.