Nonprofit plans room makeover for Northfield boy with blood disorder

Last modified: Saturday, August 01, 2015
When Seth Peake was a toddler, his parents replaced their furniture with bean bag cushions and donned him in makeshift vests crafted out of bubble wrap. Sharp corners and edges throughout his Northfield home were softened with swimming pool noodles.

But foam and ingenuity could go only so far for the now 10-year-old, who was diagnosed with hemophilia before he was born. The blood disorder is characterized by severe episodes of bleeding that can be caused by even the lightest scratch – and the insured cost of treatment is $300,000 a month.

Because of damage to his joints from bleeding over the years, Seth is now restricted to his wheelchair 90 percent of the time and needs to receive infusions every other day, sometimes once or twice a day. Although Seth does make trips to hospitals in Lebanon and Boston for pain management and treatment, his infusions are usually administered at home by his mother.

“Sometimes he has to go to the emergency room, but he can’t because he’s hurting so much,” said his father, John Peake. “To get him in the car would make things twice as bad.”

The family’s one-story home, however, is not equipped like a medical facility. The best place for Seth to receive his infusions is in his living room, down the hall from his bedroom. That can feel like a long trek for someone who has difficulty walking most days.

Now, a New Hampshire-based organization has volunteered to do what it can to make things a little easier for Seth and his family.

The Corner Kingdom Project is a nonprofit that renovates the rooms of children with disabilities and life-threatening illnesses. President and founder Tiffany Blessing-Gagnon came up with the idea when she was on maternity leave after her first child’s birth. Although her son was born healthy, she wanted to find a way to help people who were not as lucky.

“I wanted to do something to help these families,” she said. “I’m not a doctor, so I can’t treat their children. I’m not a therapist, so I can’t offer emotional support. But I’m a designer, and I believe that the environment that you’re in can really impact how you feel and your ability to heal and thrive.”

The organization aims to create rooms for kids in need that are both practical and fun.

For Seth, Blessing-Gagnon designed what she calls a “video-game sanctuary.” The fifth-grader’s new room will be themed after his favorite game – Minecraft, which involves building 3D structures out of textured cubes.

When he was 2 years old, Seth’s parents encouraged him to play Wii to keep him from running around the house, and he’s loved playing video games ever since.

“Believe it or not, it’s kind of medicine,” John Peake said. “It’s a distraction.”

Cristelee Peake described her son’s current setup as “a jumbled mess.” His room consists of a twin bed, a TV and a closet more than half-full with infusion supplies. In addition, the setup of his room and his condition make it impossible for him to have friends over to play. A new room, however, could change that.

The family is hoping to raise $5,500 for the construction of Seth’s room, which is set to begin in late August. The blueprints include a motorized bed, storage for infusion supplies, a swivel table that can be used for tutoring when Seth misses school, a reclining chair for infusion administration, a Lego building station and a new television and entertainment center.

Rock Your Morning for Seth

To raise money, the family will host a Rock Band video game tournament Aug. 15 from 9:30 a.m. to noon at Smitty’s Cinema in Tilton. Bands can be registered to compete with up to seven players, and spectators are encouraged to come as well. More information on the “Rock Your Morning for Seth” event can be found at cornerkingdomproject.org/rockband. Those interested in learning more about the Corner Kingdom Project, or making a donation toward Seth’s new room can do so at cornerkingdomproject.org/king-seth.