Vancouver Island boy hoping to raise awareness about rare and painful disease
Simon Hoskins loves playing sports. The whip-smart 6-year-old B.C. boy's favourite is hockey.
Still, as active as he is, Simon has to spend eight hours every Thursday getting enzyme replacement therapy because he has an extremely rare disease called mucopolysaccharidosis, or MPS for short.
It’s a progressive, hereditary disease caused by the absence of enzymes that break down waste in the body.
MPS reduces life expectancy, causes dwarfism, impacts internal organs and mobility, and causes bone and joint pain.
So far, there's no cure.
"A lot of people see he’s just little, and little do they know that every cell in his body is being affected by this disease," said his mother, Becs Hoskins.
The Grade One student at Ecole Willows Elementary school in Oak Bay was diagnosed with MPS when he was two years old — after his parents noticed he wasn't growing at the same rate as his twin sister.
In fact, he’ll likely stop growing by the age of 10.
"It’s hard to watch a progressive disease like this that does affect his bones," said his father, Trevor Hoskins. "He was able to walk much better when he was two years old."
There are various forms of MPS, all of them are very rare.
The type Simon has is MPS 4A, also known as Morquuionsyndrome. There are only three people in B.C. with that type and it occurs in about one in 300,000 live births.
"Simon was the first person to be diagnosed with his form of MPS in B.C. in 20 years," said his father regarding the 2019 diagnosis.
International MPS Awareness Day is May 15.
Simon’s family is coordinating a local effort at his school on Friday, to raise awareness about the disease, in advance of the international day.
The Hoskins have also started an online campaign, including on Instagram, to raise awareness focussed on how you say the name of the disease.
They’ve also set up a website about it, as well as its impact on Simon. That website can be found at curemps.ca.
People can make donations to help fund research on MPS at that website and the Hoskins are fundraising by selling shirts through the website.
Simon and his family are also encouraging his classmates to wear blue shirts to school on Friday.
All of these efforts are in hopes of finding a cure for this incredibly rare disease that an inspiring boy is battling.
"He's incredible and anyone who's met him knows that there’s a bit of a Simon magic," said his mother with a proud and knowing smile.
CTVNews.ca Top Stories
'A step forward': New screening criteria for sperm donors takes effect
Canadians looking to grow their families with the assistance of sperm or egg donations should soon have more options for donors as the federal health agency does away with longstanding restrictions criticized as discriminatory.
Ontario Provincial Police arrest 64 suspects in child sexual exploitation investigation
Ontario Provincial Police say 64 suspects are facing a combined 348 charges in connection with a series of child sexual exploitation investigations that spanned the province.
U.S. presidential candidate RFK Jr. had a brain worm, has recovered, campaign says
Independent U.S. presidential candidate Robert F. Kennedy Jr. had a parasite in his head more than a decade ago, but has fully recovered, his campaign said, after the New York Times reported about the ailment.
Police handcuff man trying to enter Drake's Toronto mansion
Toronto police say a man was taken into custody outside Drake's Bridle Path mansion Wednesday afternoon after he tried to gain access to the residence.
What is whooping cough and should Canadians be concerned as Europe declares outbreak?
There is currently a whooping cough epidemic in Europe, with 10 times as many cases compared to the previous two years. While an outbreak has not been declared nationwide in Canada, whooping cough is regularly detected in the country.
Pfizer agrees to settle more than 10K lawsuits over Zantac cancer risk: Bloomberg News
Pfizer has agreed to settle more than 10,000 lawsuits about cancer risks related to the now discontinued heartburn drug Zantac, Bloomberg News reported on Wednesday, citing people familiar with the deal.
Steve Albini, legendary producer for Nirvana, the Pixies and an alternative rock pioneer, dies at 61
Steve Albini, an alternative rock pioneer and legendary producer who shaped the musical landscape through his work with Nirvana, the Pixies, PJ Harvey and more, has died. He was 61.
Case against ex-Mountie charged with helping China can go ahead in Quebec, judge says
A Quebec court judge has ruled that the case against a former RCMP officer charged with helping China conduct foreign interference can go ahead in the province.
Ippei Mizuhara, ex-interpreter for baseball star Shohei Ohtani, will plead guilty in betting case
The former interpreter for Los Angeles Dodgers star Shohei Ohtani has agreed to plead guilty to bank and tax fraud in a sports betting case in which prosecutors allege he stole nearly US$17 million from the Japanese baseball player to pay off debts, federal prosecutors said Wednesday.