Boy who can't be exposed to sun gets a custom tent to play in his yard
When Brody, a 4-year-old Connecticut boy, was asked what wish he wanted to come true, his only dream was that he could be able to play outside.
Brody, of Griswold, Connecticut, was born premature at 27 weeks and faces medical conditions and medications that cause him to overheat and burn easily meaning he can’t spend any time outside, according to his mother, Julia Rubin.
“He’ll get burn blisters on his face just driving him from the house to the hospital,” Rubin, a single mom to Brody and his three siblings, told “Good Morning America.” “There are all of these things he can’t do.”
Brody was born with chiari malformations, structural defects in the part of the brain that controls balance, according to the National Institutes of Health (NIH).
He has trouble walking and lives with chronic, debilitating pain, according to his mom. He only began talking one year ago after undergoing surgery to remove some of the pressure in his brain, Rubin said.
Brody has also never been able to eat or drink and wears a backpack 24/7 that contains a pump that feeds him, according to Rubin.
“I can’t even count the number of surgeries he’s had since he’s been born,” she said. “He’s spent probably half his life at the hospital.”
When Make-A-Wish Connecticut, an organization that creates life-changing wishes for children with critical illnesses, heard about Brody’s request to play outside, they immediately jumped into action.
This was two years ago, in 2017.
"It’s the most simple, most sweet wish, just to play outside but it turned into the most challenging wish I’ve ever had to put together," said Debbie Artinian, the wish manager at Make-A-Wish Connecticut who coordinated Brody's wish. "We’ve never done anything like it before."
Artinian and her team determined that a temperature-controlled tent outside Brody's home where he could play and not be in the sun would be the best option, but then had to find a tent that was not permanent, could withstand weather conditions like wind and snow, had the right material to block all UV rays and one that could be made with small and low windows that could be taken down by Rubin alone if needed.
Artinian finally found a company based in the United Kingdom that could design and make the tent. Then she discovered that a deck would need to be built so that Brody, who will one day be in a wheelchair, could access the tent on his own.
"A local company donated all the lumber and another contractor went out and built the deck for us," said Artinian. He was a complete stranger and he really is the one who helped us grant the wish because we had the tent but we didn’t have a way to put it down without the deck."
Brody got his first look at the tent earlier this summer, in June, at a party that featured his favorite superhero, Spider Man.
"When he walked out of the door and I saw his face, it was just everything," said Artinian. "Now when Brody says, ‘Can I go out and play,?’ his mom can say, 'Yes.'"
Not long after the tent was installed at his home, Brody faced more medical complications and was hospitalized for much of the summer.
He is now back home and enjoying spending nearly all his time "outside" in the tent, according to Rubin.
"He loves it," she said. "He just says he's going outside and he can go right to it."
One side of the tent features a beach scene because Brody loves the beach, even though he is not able to go into water because of his backpack. Make-A-Wish Connecticut filled the tent with water toys and a kids' pool filled with balls to make Brody feel as much as possible like he's out at the beach.
"I can't say enough thanks. There is not enough gratitude," Rubin said of the wish Brody was granted. "It’s hard to make life completely normal for Brody but we try to make it as normal as we can."
"I'm just happy for every day I get with him," she added.
