NEW MILFORD, Penn. - A selfless 15-year-old Pennsylvania boy who suffers from Krabbes disease is asking for people to “bless” police officers with cards for his birthday on Saturday.
Josh Bourassa, of New Milford, Pennsylvania, told his mother Rebecca Bourassa that he was “very blessed already,” so he would like everyone to give a card to local police instead and “bless as many officers as he could for his birthday.”
“So I asked Josh what he would like for his birthday, and he looked at me and he’s like, ‘Hmm, mom I don't really need any toys,' and he said, 'I have lots of stuff and I had a room makeover,'” Bourassa said. “'And all the police officers are so nice to me,' and he said, 'I would just would want to give them a card and have everyone give them cards instead.'”
“He’s a got a big heart, a big smile, and always thinking about everybody else before he thinks of himself,” she said of her beloved son, adding that he has always been fascinated with police ever since he was little.
When Josh was about 4 years old, his family gave him a Power Wheels police car, and they have called him “Trooper Josh” ever since.
Krabbes disease (KD), also known as globoid cell leukodystrophy, is a rare genetic disorder that destroys the protective coating (called myelin) of nerve cells in the brain, resulting in progressive damage to the nervous system. There is no cure for the disease.
Josh’s big brother also had the same disorder and passed away at 9 months old, the mother said. Doctors told Bourassa that infants with KD typically don’t live past 2 years of age.
“Josh is going to be 15,” she said. “He’s a miracle.”
But she said his disease is progressing and he has basically lost the use of his right side. He’s gotten very weak and “they had to put a feeding tube back in him,” she said.
“For me, it’s so hard to see him like this. And it just breaks my heart so much,” the mother said. “But he doesn’t complain, and he’s a happy kid. I can’t explain it to you. He’s just always so happy. And I’m telling you he can melt a room.”
She said his he now has a “total collapse scoliosis” with a 136-degree bend, which is so bad that doctors told her “it’s just a matter of time” before his heart or his lungs could be crushed. There is a very high chance that he could go into cardiac arrest or not be able to breathe at all, she said.
Josh is getting treatment in Pittsburgh. In November, doctors there will try to protect his airways and delay the adverse effects of the scoliosis.
“Trooper Josh” and his mother are thankful for the police that have offered support throughout his challenging journey living with KD.
Around 2 years ago, Josh was very sick in the hospital and one of Bourassa’s friends organized a spaghetti benefit dinner for him. Police were invited and attended the benefit, where Josh was able to meet them in person, Bourassa said.
Now, police officers “come by all the time” and stop by to check on “Trooper Josh,” the mother said.
Also about 2 years ago, Josh was invited to a police academy in Frederick, Maryland, where he had “so much fun,” Bourassa said.
“He got to go on the SWAT ride, high-speed chase,” she said. “They showed him all the guns, all the dogs. We spent the whole day there and had so much fun.”
When Josh was in the hospital in Pittsburgh, “all the officers from different zones would come by all the time.”
“They would visit him in his hospital room. They decorated his hospital room, like all police-themed,” the mother said. “There were so many officers that came. They would visit with Josh. They would talk with him. And I just honestly feel like that motivates him to get better.”
She said Josh has also had a lot of officers from other states send him letters and badges.
“He’s got so many badges that are hanging up in his room,” Bourassa said.
It's not just law enforcement that have sent their love and support for Josh, which has been “absolutely amazing,” Bourassa said.
“I don’t get out of the house much. I’ve devoted my time to taking care of him,” the mother said. “And it’s so nice to have so many people messaging me, calling me and coming by the house, just saying, ‘Hey, we heard your son’s story and I just want you to know what it’s done for me in my life.’ And it’s like... my little Josh is doing this.”
His school had a big party to honor “Trooper Josh,” where he was so excited that he got to dance and get pictures with everyone, Bourassa said.
“We had the community get together and they built a ramp for him in front of the house for us, so he can get in and out with his electric wheelchair,” she said. “So we’ve been very blessed.”
This story was reported from Los Angeles.