Brave 6-year-old Rome boy looking forward to Make-A-Wish trip to Walt Disney World

Published Feb 4, 2018 at 9:00am

Make-A-Wish Central New York, with the help of the Utica College men’s hockey team and their dedicated fans, recently surprised 6-year-old Seth Willson, of Rome, at Utica Memorial Auditorium, with his “wish” of taking a special family vacation. 

On the ice, in front of thousands of game attendees, Make-A-Wish representatives told Seth – who suffers from a rare life-threatening inflammatory muscle disease, known as Juvenile Dermatomyositis, that his dream would soon be coming true — a trip to Walt Disney World in Orlando, Fla. with mom Amanda and dad Tim.

After being referred to Make-A-Wish by his pediatric endocrinologist, Dr. David Weber in Rochester, Seth and his family were connected to Make-A-Wish Central New York wish-granting volunteers, who helped him determine his one true wish. While Seth had asked to visit Walt Disney World, he was unaware his wish would be coming true until the Utica College men’s hockey game.

Just before puck drop, Make-A-Wish staff and volunteers guided Seth and his parents onto the National Anthem red carpet.

After the announcement, Seth was guided to Adirondack Bank’s rink-side suite, where his extended family and friends were waiting for him. Adirondack Bank provided 17 tickets for Seth and his family and friends, as well as a buffet dinner and beverages so they could enjoy the game and celebrate the wish announcement in style.  

The announcement kicked off an evening filled with hockey, wishes and Dunkin’ Donuts, which brought along 750 specialty “Star Donuts” for attendees to enjoy in exchange for a $1 donation to Make-A-Wish. Dunkin’ Donuts is a significant supporter of Make-A-Wish Central New York, generating upwards of $60,000 annually through its “Star Donut” and “Spare Change” campaigns. 

Wishes cost the chapter an average of $12,000 each. With 120 wishes in process – more than at any time in Make-A-Wish Central New York’s 32-year history — the need for community and corporate support is needed more than ever, said spokeswoman Dyana Smolen. 

Seth continues to work hard as he attends regular visits to Golisano in Rochester for infusions and physical therapy treatments because he vows to one day be out of a wheelchair, mom Amanda said.

His Juvenile Dermatomyositis is already rare, with four in one million suffering from the disease. But what makes Seth’s condition even more unique, is that he also suffers from myositis ossisicans, which is the formation of bone tissue inside muscle tissue after a traumatic injury to the area. ​“When or if Seth gets bumped, bruised, vaccines, or poked for an IV, he has the potential to grow an extra calcium deposit at the site of injury,” Amanda explained. “His poor little body is full of calcium deposits, and they come out like rocks. We have to wait for them to come to the surface and break through (the skin), which is excruciating for him and he’s left with this gaping hole. He has to wait for the skin to grow back and fill in. He goes to Upstate Wound Care (in Syracuse) every five weeks for care of those.”

She said, “There’s some (holes) on his hips that have been there for over four years that don’t heal, and he just keeps growing more (deposits). An X-ray is clouded and you can’t see his hip bone because of it. He was hospitalized over the summer because he had one (deposit) that burrowed into his leg instead of out, and he had a nasty infection going through his body, so he had to have surgery. Now Seth has a golf-ball size one in his leg. If they (surgeons) open him up, he will grow more. So he can’t really have surgery.”

Dr. Weber, the endocrinologist in Rochester who nominated Seth for Make-A-Wish, gives him an infusion every three months that “melts” the calcium deposits, for lack of a better term, the mother said.

The infusions allow the calcium deposits to liquefy, which is less painful when they are released from Seth’s body, she said.

From the beginning of his life, Seth has had to overcome some overwhelming challenges. Amanda said her son actually died at birth, and was revived, but because of that, he had a lesion on his brain. His prognosis was great, however, at age 2, Amanda said it was like someone had “flipped a switch.”

All of a sudden “he couldn’t walk, crawl or roll over anymore,” the mother said. “Seth went through all this testing. At first they thought he had a stroke, but his brain was fine. For 2 1/2 years we chased this until it got to a point when I said enough is enough.”

Finally Dr. Weber approached Amanda and had a theory as to what was ailing Seth — the Juvenile Dermatomyositis, which is considered a “very distant cousin” to rheumatoid arthritis, Amanda said. That is when doctors performed a muscle biopsy on Seth.

“Dr. Weber told me, ‘We can’t cure it, we don’t know why it exists or where it comes from, but we can treat it and he’ll have a long and relatively healthy life,’” Amanda said. “The infusions and all his treatments — occupational therapy, physical therapy and speech — he’s doing really well with, and he’s determined. He tells me all the time, ‘Mom, I’m not going to be wheelchair bound. I’m going to walk again.’”

“One of most amazing things about Seth is despite the pain he’s in and things he hears” from others about how he looks or what he’s going through, “he still loves people, loves life and he’s happy,” the mother said.

With the Make-A-Wish granted, the Willsons, of Brennon Avenue, hope to be heading down to Orlando, Fla. in the beginning of March.

“I took Seth to Disney World when he was 3, because we didn’t know how much time he would have,” Amanda said. “So Seth is very excited about seeing some things again and getting to share them with his dad. We can’t wait to see and experience some of the new things too.”