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.