A young Brockville, Ont. mother is in a desperate race against time to raise a million dollars for experimental treatment for her critically ill toddler.
“It’s a matter of life and death, and if something is not done, then he’s going to die,” Kristen Sturgeon said, choking back tears in an interview with CTVNews.ca. “I can’t live without Kaiden and I won’t -- I’ll do whatever I can.”
In June 2015, at the age of just two weeks, Kaiden Sturgeon-Harper was diagnosed with Sandhoff disease: an incredibly rare genetic disorder that progressively destroys nerve cells in the brain and spinal cord, leading to lost motor skills, seizures, intellectual disabilities as well as blindness, deafness and paralysis. The infantile form of the disease, which Kaiden has, affects roughly one in 400,000 children. Most do not live past the age of five.
“He’s just so sweet,” Sturgeon said of her little boy. “His love just shines through his eyes -- that’s his way of communicating.”
At a time when Sturgeon should be running and laughing with her son, the 25-year-old mother instead finds herself changing catheters, cleaning feedbags, clearing his airway and carrying him everywhere he needs to go. Worst of all, the toddler suffers from daily seizures, forcing Sturgeon to watch her child gasp for air while his lips turn blue.
“We are not OK,” she said. “This is a daily struggle.”
Kaiden is currently participating in a drug trial through the University of Minnesota that may be prolonging his life. Costing approximately $10,000 per month, Sturgeon says their family’s insurance provider recently stopped covering the medication. They have only a month’s supply of the drug left, she says, thanks to the mother of another child with the disease who tragically passed away.
“It’s the only thing we have available right now,” Sturgeon said. “But we don’t even have it available right now because we can’t afford $10,000 a month.”
But what Sturgeon is really hoping for is being able to raise $1 million to help fund a human trial of a potential cure developed by Dr. Jagdeep Walia, a clinical geneticist with the Kingston General Health Research Institute and Queen’s University.
“In animal studies, we have been quite successful in long-term correction, but that does not mean that we have found a cure in mice yet,” Walia told CTVNews.ca. “It is good enough that we can go ahead into clinical trials.”
Even if Walia’s application for a clinical trial is promptly approved by Health Canada, the researcher cautioned that human trials would not begin until late 2018 at the earliest. Having the treatment become an approved clinical option could take another three to six years, Walia said.
One of the biggest problems facing the researcher is funding. Approximately $2.5 million to $3 million is needed to move forward, though pharmaceutical companies, Walia said, can be reluctant to fund research into treating such extremely rare diseases. Kaiden is one of only two known Sandhoff cases in Ontario.
“If there are people who can donate money, that would be wonderful,” Walia said. “We are looking for help.”
And even if a cure is not developed through his research, Walia at the very least hopes to find an effective treatment for Sandhoff disease, as well as similar Tay-Sachs disease, which also has two known cases in the province.
“Long-term correction means that you give the treatment early enough that the children survive and live a meaningful life,” he explained. “I see these patients so often that I want to do something for them because there’s nothing for them.”
As optimistic as she is, Sturgeon knows to temper her expectations.
“We don’t know if it will bring back the damage that’s been done, that is why we need it now before it progresses any further,” she said of the experimental treatment. “My son does not have time, so I’m going to fundraise like crazy.”
Over the past two years, Sturgeon has raised more than $35,000 through several fundraisers as well as two online crowdfunding pages
“I just feel like my son deserves the right to this medication,” she said. “He deserves a chance at life like everyone else.”
To follow Kaiden’s journey, visit www.cureforkaiden.com. The family’s online crowdfunding campaigns are being hosted by GoFundMe and YouCaring. Sturgeon also posts regular updates on Kaiden on her personal Facebook page.
With files from CTV Ottawa
