At the end of a long day at the Children’s Hospital of Eastern Ontario in Ottawa, the Barbers sit in a dimly lit exam room. The TV plays cartoons in the background. The father sits in his son’s wheelchair, the mother in a chair, and J.J., a 13-year-old boy with Duchenne Muscular Distrophy, as well as autism, sits on the examination table. This is one of the first moments of respite that the family has had, after a long day of running around. From blood works to different scans, the family has not stopped since 8 a.m. that freezing cold early-winter morning. In the ultrasound exam room, the last of a battery of tests conducted that day, Lisa, James and their son J.J. sit in a tired silence. J.J. parrots the T.V. show, and Lisa reaches over to touch her son’s foot. She slowly lifts up the leg of J.J.’s sweatpants and proceeds to pretend to bite her son’s calf. She then gently begins to tickle him.
“He’s pretending to resist me. I know he can’t resist my tickles,” she says.
Seeing this, James reaches over and begins to tickle his son’s other calf, prompting the boy to explode in a fit of uncontrollable laughter.
After a long day of tear-inducing tests, needles for blood work, a painful ultrasound, and a failed attempt to inject the boy with Zometta, an osteoporosis medication, the laughter was a welcome relief.
J.J. had been part of a clinical trial for an experimental drug to improve calcium binding in osteoporosis. However, the young boy was put in the control group. This meant that he would have to endure the industry standard, an hour and a half long injection of Zometta, a calcium binding enhancer.
On the last day of the trial, sadly, the young boy’s veins bruised too much. This meant that he could not, for the first time, receive his dosage and would need to return at a later date.
As the day came to a close, the weary family waited for the final results of the ultrasounds to come in before leaving CHEO to go get McDonald’s, J.J.’s reward for being brave the entire day.
The three of them had driven in the night before from Trenton, Ont. and stayed at the Ronald McDonald House. J.J. had been part of the clinical trial for nearly two years.
“We used to do this as a day trip,” said James Barber, “but it was too exhausting.”
The family also hadn’t realized that they could access the Ronald McDonald House, accommodations that saved them energy, time and, most importantly money. Outside the clinical trial, a single infusion session costs around $600.
Between rent, different medications, specialized treatments for J.J. and most recently a newly purchased wheelchair-accessible van, every penny counts. The price tag hit close to $70,000, half of which the family had to scrounge through donations.
James, the father, has a form of Asperger’s; Miller, J.J.’s eldest adoptive brother, is on one end of the autism spectrum; Jason, J.J.’s older brother, is another; J.J. is wheelchair bound and on the autism spectrum; and finally, Lisa, has a mild form of autism. Living at the Trenton Non-Profit Housing Association, living in a household where all five members are on disability presents a particular challenge. Doubly so that J.J. is now wheelchair-bound.
Although getting dressed sounds like a normal morning routine, it isn’t necessarily when the child has autism and is wheelchair bound. Kicking, screaming, and fighting can all be regular occurrences. To add to the hard labor, Lisa has to transfer JJ from his bed to his wheelchair. JJ has put on weight due to the steroids he has to take and tends to go limp when he is lifted up, making the switch trickier than it sounds. Add to that Lisa’s knee problems and the affair becomes a herculean task only a mother can handle. But Lisa does it gladly.
While Lisa takes the morning shift, James takes the evening. Three to four times a week, James will carry JJ up the stairs from the living room up two flights of stairs to give his son a bath. With a bad back and his 60s just around the corner, James is unsure how much longer he will be able to carry his son up the stairs.
A brief moment of joy came from Habitat for Humanity, three years prior. In 2015, they were told by the charity that they were finally going to have a new home built for them by Christmas 2015. Their turn finally came in the winter of 2019. Habitat for Humanity finally got back to them. A few blocks away from their home, Habitat for Humanity was able to find a plot of land large enough to accommodate several homes. The land breaking ceremony will be happening in April of 2019 and they should get the keys by September 2019.
When JJ was learning to walk, he would walk on the balls of his feet. For many children with autism, this may be a way to avoid overstimulation in the feet according to some research. This seemed, therefore, logical as all the Barbers are on the autism spectrum. It was this confusion that led to him being diagnosed with Duchenne Muscular Dystrophy much later. However, with frequent falls and a waddling gait, it became obvious that JJ had more than just autism. He had Duchenne Muscular Dystrophy. The neuromuscular disease is prominent in boys and is characterized by a progressive loss of muscle, according to the Muscular Dystrophy Association. It affects many parts of the body, including skeletal, heart, and lung muscles.
At the age of 13, J.J. loves Disney movies, Nintendo’s Mario, Sonic the Hedgehog, video games, and solving Perplexus puzzles. He is also wheelchair-bound, has 60% of his lung capacity, and has to take steroids to protect and maintain his heart strength.
The most recent piece of good news came some time after the long and grueling day at CHEO: The doctor was able to secure J.J. Zometta treatment for as long as he needs it. He will receive the infusions in Kingston, a 45-minute drive away from his home (a stark contrast to the three-and-a-half hour drive to and two day ordeal at CHEO).
The best part: the medication will be absolutely free of charge.
Credits:
Story and Photos by Andrej Ivanov