A St. Albert couple is grateful for the community support they have received after their son was diagnosed with a rare genetic mutation.
Nicole and Nathan Pratap's son Rye was born on June 5, 2024. Nicole went into labour the same day as the grand opening of Nathan's family-owned restaurant, Cerdo Tacos + Tequila. After complications with Rye's birth, they started noticing some things were off with their newborn.
"There were little things, like he had a short femur, his head stopped growing," Nicole said.
After Rye was born, they had a 19-day stay in the Neonatal Intensive Care Unit (NICU). He had to be resuscitated and was on continuous positive airway pressure (CPAP). Other issues started popping up afterwards.
"Feeding issues is kind of what we noticed from the start," Nicole said. After a brief stay at home, Rye became ill again and they went to stay at the Stollery Children's Hospital. They had to push hard for additional testing.
"I just kept voicing my concerns that something wasn't right developmentally. He seemed behind. He never made eye contact with us," she said.
"We were comparing everything that was going on with him up to that point with our first son," Nathan Pratap said. An MRI scan revealed Rye had an underdeveloped cerebellum and an abnormal brain stem. Additional genetic testing revealed that because of a genetic mutation in the CASK gene, Rye had microcephaly with pontine and cerebellar hypoplasia. Fewer than 300 children in the world have this condition, and there is no known cure.
The Prataps immediately got to work to try and get their son the care he needed. Nicole reached out to Project CASK, a non-profit based in the United States, as well as various other groups to try to understand the steps they needed to take to get Rye the treatment as soon as possible.
"It's one of those things where we have to do what anybody says if they say, 'There's a glimpse of hope when you do this.' We don't care, we're going to do it," Nathan said.
After communications with different groups and families and online searching, they found out about Reyu Paralysis Recovery Centre in Edmonton, just 15 minutes away from their home.
At Reyu, they are doing intensive therapy for Rye. Therapy sessions last two hours a day, twice a day, and they do them for two weeks at a time, four times a year. The physical activity includes spinning him on a board, akin to astronaut training, as well as working on sitting, crawling, and eye tracking. They also have Rye doing aquatic therapy and attending chiropractic care.
"It's a lot and it's obviously changed our life, and it will continue to change our life. But basically from now until he's three, this is go time," Pratap said.
Rye started his therapy at Reyu in January. Before it, Rye couldn't grab anything and couldn't sit up. He has recently started reaching and grabbing for toys and other things around him, stunning his parents.
"It was amazing," Pratap said. She said she had "CASK moms" messaging her from all over the world, amazed at Rye's progress.
"He was just thriving," she said. "He's just a happy guy. He's eager to learn. So he did really, really well. And now we do exercises every day."
The treatments and therapies Rye is undergoing come at a cost. Reyu's intensive programs cost $120 per hour. To help with the cost, the Prataps' friends set up a GoFundMe. So far they have raised over $37,000 of their $50,000 goal. The Prataps are grateful to the friends, family, and strangers who have donated.
"I didn't think this thing was going to hit $5,000," Nathan said.
"We are so appreciative and humbled by the community and what everyone has given us," Pratap said.
They were initially unsure about the idea of setting up a GoFundMe, but hope raising awareness of Rye's condition and their family's journey can help families who might go through something similar.
"I understand that it is expensive to take your kid two times a day there," Nathan said, but he wanted to raise awareness that places like these existed in Edmonton for other families.
"Unless you've walked in those shoes, you're not going to know," he said.
