Imagine if your doctor told you to abort your baby due to a 25 percent chance of his having Krabbe disease; and even if you choose to have it, the child might only survive for two years. Say you chose to have the child because you don’t believe in abortion, and you see him survive not only two years, but you are celebrating his 17th birthday with his favorite people, the police officers.
That is the story of Josh Bourassa and his mother, Rebecca. Josh barely weighed four pounds, three ounces when he was born on July 13, 2004. He was diagnosed with Krabbe disease, a hereditary disorder that destroys the protective covering of nerve cells in the brain, and eventually the nervous system, resulting in dramatically decreased life expectancy. Patients seldom live to be two years old.
Rebecca had another child before Josh who was also diagnosed with Krabbe. Unfortunately, the child succumbed to his illness in 2003. Nine months later, she conceived Josh. When the doctor told her about the child’s condition, she refused an abortion and instead started to prepare. Rebecca hunted for information about the disease with the help of her parents. She made arrangements for her newborn to be a part of Duke University’s experimental cord blood transplant program for uncommon disorders.
One of the most heartwarming things is seeing a family bear a burden together. This is exactly what the Bourassa family did. The entire family adapted to Josh’s needs. For instance, Alyssa, his older sister, learned to operate a suction machine, a port feeding tube, and IV pumps at the age of seven. She assisted with blood draws in the morning for Josh.
As Josh grew, he always found ways to engage with the outside world, despite his disabilities. He also has a terrific sense of humor. As for the mother, she would bring the entire galaxy down to her son if he asked for it. When Josh wanted to drive a car, Rebecca placed him on her lap and let him drive. When he was interested in roller skating, she bought him skates.
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However, Josh’s health has been deteriorating over the last five years. His peripheral nerve disease spread through his neck and back, and he lost the use of his right arm and shoulder. This resulted in severe scoliosis, which requires surgery. The family maintains their optimism and never gives up hope or allows negative thoughts to affect them.
When his doctor told Rebecca that Josh’s condition was advancing, she couldn’t stop crying. Josh, on the other hand, was enjoying a cupcake when he chimed in, “Listen, stop making my mom cry all the time. You told her I was gonna die lots of times before … guess what, I’m still here and I can do everything I want to do, so you doctors don’t know everything.” This made his entire family, including the doctor grin.
The family enjoys watching police officers on TV while they are in the hospital. This, Rebecca believes, is what sparked Josh’s interest in law enforcement and his desire to join it one day. He says he likes police officers because they are extremely amazing and they help people. He enjoys seeing them; he loves the cars and the lights.
Now for the best part, on his 17th birthday, Josh was dressed in a Gibson state police uniform that was gifted to him. His mother and he had a special photo shoot to commemorate his birthday. For this day, Rebecca messaged a local photographer, Erika, who secretly invited the police to the photoshoot as well. Josh was thrilled to be accompanied by police officers. Rebecca told the Epoch Times, “He loved the police truck and didn’t want to get out of it.”
This isn’t the first time they’ve run across each other. The Pittsburgh Police Department used to visit Josh every day while he was having his scoliosis surgery. They’d bring food, presents, and toys. They even spend hours with him playing Uno, neft gunfights, and snowball fights.
The proud mom said, “Josh is strong-willed and he loves life.” Josh believes that everyone in the world should have a family and that if you know a child who doesn’t, he advised, “be a family to them, and buy them some chocolate because chocolate always makes kids happy!”
Josh lives in Pennsylvania with his parents, older sister, younger brother, and three cousins who are in the custody of his parents.
