This Friday, March 23, at 6 pm, the Island community will come together for a fundraiser at the Portuguese-American Club for Jakob Burton-Sundman. Jake’s sister Grace came up with the idea of a sort of welcome home party/fundraiser for Jake as he heals from back surgery and faces months of rehab ahead. His parents, Betty Burton and John Sundman, as well as his sister Janaiba, have been supporting Jake as he goes through this latest health crisis. Music at the event will be provided by Rose Guerin, Delanie Pickering, Josh Campbell, Anthony Gude, and Geordie Gude, and there will be plenty of food and auction items up for grabs. Tickets are $20, and will be available at the door.
What happened to Jake came out of the blue, and caused his family a great deal of anxiety, despite his own sunny attitude. We visited him this week, and he told us about the day back in December when his life, and that of his parents, changed.
Jake said when he woke up at his Lagoon Heights home on the morning of Dec. 5, his feet were tingling. He said he didn’t think much of it, considered that maybe his feet were still “asleep,” and continued getting ready to head over to Daybreak Clubhouse in Vineyard Haven. By the time he arrived and was climbing out of the van, he was much more unsteady, he said. Staff at Daybreak noticed, and Jake was soon on his way to Martha’s Vineyard Hospital. Doctors there determined Jake’s spreading paralysis required a trip to Boston, and he rode to Brigham and Women’s Hospital in an ambulance with his dad. Before he knew it, Jake was in ICU, paralyzed from his chest down and no one could figure out why. At first his parents wondered if this newest scare had something to do with his congenital condition, toxoplasmosis.
“It is a disease caused by a parasitic infection that is especially dangerous to fetuses. The Toxoplasmosis gondii organism can be acquired from undercooked meat, from gardening soil, or infected cats — the reason pregnant women are advised to stay away from kitty litter,” Betty explained. “Like Jakob, virtually every child born with toxo has damaged eyes. Other conditions, such as seizure disorders, hydrocephalus, poor immune response, and neuromuscular impairments are common. From infancy, Jakob has had his share of serious health crises, but through them all he has remained courageous and upbeat.”
Betty’s career before she landed on the Island in the mid-1990s was as a molecular geneticist, so she’s familiar with medical research, and was able to use her knowledge to help navigate Jake’s challenges since he was a baby. But Jake’s problem this time around left everyone dumbfounded as he lay in the ICU on oxygen and steroids.
Doctors ordered several MRIs, but couldn’t find the source of the problem, Betty said.
“Nothing made any sense, and finally this wonderful surgeon looked at it and said, ‘We’ve done four MRIs of the upper back, let’s do one of his lower back,’” Betty said. Finally, they discovered that the problem was ruptured discs and a skeletal structure that had deteriorated well past what you might expect for a 34-year-old man.
“They finally figured it out, and they said, We’re operating tomorrow,” Betty said. “They fused some discs, put in titanium rods and a plate … nuts and bolts … and put him back together.”
Jake spent three months in Boston, first at the hospital and then at Spaulding Rehabilitation Hospital in Charlestown. John, a retired Tisbury firefighter, novelist, and technical writer, was with him literally every step of the way, while Betty held down the fort on the Island, with her job as head of adult programming at the Vineyard Haven library and her role overseeing the Vineyard Committee on Hunger. John was trained at Spaulding on how to care for Jake and how to assist him as he continues his daily physical therapy exercises. Jake was able to return home to Oak Bluffs recently, now that he can get himself in and out of the wheelchair, put his braces on, and can use assistive devices to prepare meals. Twice a week Jake and John head off-Island to Spaulding’s Sandwich satellite, and Jake gets an hour and a half each of physical therapy and occupational therapy.
Both John and Betty credit the excellent care Jake received at Spaulding for getting him ready to come back home. At Spaulding, Jake used cutting-edge technology, the Lokomat Robot Walker, to regenerate his nerves so that he could move his legs to walk again.
During our visit, Jake and his dad went through some of his exercises, and he was able to get himself into a standing position with his walker. Jake walked slowly, with John nearby, down the hallway and into the kitchen and then back again. Jakob sat down in his wheelchair when he was finished and began leg lifts while his dad counted: “One, two, prime number 3, 2 times 2 — 4, prime number 5 …” until Jake made it to 20. His expression was determined, and the way his dad counted off what have surely become routine exercises made him smile.
John explained how Jake used to commute to Falmouth regularly, where he worked at Walmart as a greeter and visited his girlfriend. His life was busy and full, and the hope is that after more months of physical and occupational therapy, he’ll return to his old life.
“I had to stand for a lot of the day at my job,” Jake said.
“He’s taken a leave of absence until August,” John explained. “Hopefully by then he’ll be back to walking the streets of the Island.”
Jake’s very matter-of-fact about what happened, and admits he’s one of those people who always looks at the glass as half full. “Besides,” he told me, “even if the glass is half empty, there’s always a pitcher around someplace, and you can fill it back up again.”
Right now, he said, he takes it day by day. “Even something that is negative, if you put it in the right light, is really somewhat positive,” he said.
His parents are used to Jake’s health crises, but this one has been particularly stressful. “We really work as a team to take care of him,” Betty said. “John’s been the one that stays with him, and I set up the ferries. We take the opportunity to go to a movie sometimes. We have to get out and get away from everything and not think about it. The night the power was out was tough, because I just lay there and my mind was swirling.”
Hopefully the welcome home fundraiser on Friday will give the family an opportunity to celebrate with their neighbors and raise some funds to offset some of Jake’s expenses.
“Many people have seen Jake on the Island,” John said. “Jakob walks everywhere, and that’s what we hope he can get back to. The distance he walks goes up a few feet each day, and we’re hoping by the end of summer, you’ll see Jakob walking on the sidewalks of the Island again.”
Benefit for Jakob, Friday, March 23, 6 pm, at the P.A. Club, 137 Vineyard Ave., Oak Bluffs. Rose Guerin and friends entertain; clam chowder, appetizers, and desserts and other treats by Island friends and caterers, and lots of silent auction items. Tickets $20 at the door.