For Nikhail, being active has always been part of who he is. That’s why, when the usually energetic 10-year-old started feeling tired last fall, his family knew something wasn’t right. Then came the rashes and soon, things like walking, raising his arms and lifting his head started getting harder.
For months, his family searched for answers as Nikhail continued to lose strength. Then, at the end of January, they finally got a diagnosis: juvenile dermatomyositis (JDM), a rare disease that causes muscle weakness and inflammation. Nikhail and his family spent several months navigating a complex health-care system in order to connect with specialists familiar with his ultra-rare condition.
“When your child is sick and you don’t have answers, every day feels critical,” says Parmdeep, Nikhail’s mom. “We spent months searching for a diagnosis while Nikhail’s condition continued to deteriorate. We were trying to find specialists who understood what Nikhail was experiencing. The waiting and uncertainty were incredibly difficult.”
Through Together We Dare, we’re raising $100 million to establish A Centre for Excellence in Childhood Disability. We’re filling urgent gaps in care through our developmental pediatrics subspecialty residency and fellowship program. Thanks to The Slaight Family Foundation, we are doubling the number of trainees each year – making sure that kids like Nikhail can get the treatment they need no matter where they live. We also train the next generation of physiotherapists, speech therapists, occupational therapists, social workers, psychologists, recreational therapists, music therapists and more.
Finding his strength again
After finally receiving his diagnosis, Nikhail came to Holland Bloorview as an inpatient ready to begin the long process of getting back to the things he loved.
“Access to specialized care at Holland Bloorview has made an enormous difference in Nikhail’s life and given us hope, confidence and a path forward. Every family deserves access to that kind of support when they need it most,” says Parmdeep.
There was baseball, badminton and time in the pool, while evenings meant recreation programs, card games with friends and walks outside.
Little by little, all that work began to show. When Nikhail first arrived, climbing the stairs was one of the hardest things for him to do. It took nearly four months before something he once wouldn’t have thought twice about started to feel that way again. Now, he says, the stairs are easy.
But those five months gave Nikhail more than his strength back. Somewhere between the hard days and small wins, he and his mom started discovering new sides of him, too. Through music therapy, Nikhail picked up a ukulele before moving on to guitar and learning songs like “Riptide” and “Radioactive.” He spent more time making art, too.
Now 11-years-old and home with his family and his dog, Nikhail is focused on what he calls his “regular stuff,” including a new goal: hitting baseballs farther.
But after everything it took to get back there, Nikhail knows progress doesn’t always happen quickly. If another kid were at the beginning of a journey like his, he knows what he’d tell them.
“It might be hard, but keep on trying,” he says. “Just take it day by day. It gets easier.”
For Nikhail, that’s the dare: trusting that one day at a time can take you a long way.