Harpreet and Gaganpreet Deol are racing the clock to raise the millions of dollars it will take to ensure their baby has a shot at a normal life.
The Surrey family’s 11-month-old son Aryan has spinal-muscular atrophy (SMA), a condition that causes muscular weakness and atrophy.
“When he was born he was very active and healthy. After five months … his muscles were getting weak. When we went to hospital, he was diagnosed with SMA type-1,” said Harpreet.
“All the time I’m busy with him, I need to watch him,” she said.
“His breathing … sometimes he’s unable to swallow his saliva. We’re using a suction machine for his saliva. He always needs someone around him.”
Aryan needs to be fed through a tube and requires a machine to help him fill his tiny lungs at night.
He’s currently on a therapy called Spinraza, which hasn’t significantly improved his condition and requires regular spinal injections.
There’s no cure, but there is another drug called Zolgensma that’s described as not just life-saving, but life-changing.
Aryan would need treatment before he’s two-years-old for it to work.
“We have only one year left,” said Harpreet.
There’s just two problems. The drug is not approved in Canada. It’s also known as one of the priciest drugs in the world — the one-time treatment in the U.S. will cost them about $2.8 million.
“I can’t say how hard it is,” said Gaganpreet.
“That treatment can help Aryen to get his normal life.”
The family was inspired to come forward after hearing about another B.C. SMA case, baby Lucy Van Doormaal — who’s appeal for help to get the same drug has gone global.
That campaign has now raised more than $2 million.
The Deols are now hoping the community can come together to help ensure Aryan, too, won’t live a life attached to tubes and machines.
“This disease can take his ability to walk, swallow, breathe,” said Gaganpreet.
“We’re asking everyone to help us as much as they can, right? Even one dollar, two dollars, anything can help.”
So far, the family has raised just $68,000 of their $2.8 million goal.