Aryan’s Fight Against SMA :This Surrey family are finally raced the clock to raise more than $2.8 million for their baby’s life changing treatment.
Harpreet and Gaganpreet Deol’s son Aryan Deol, who recently turned one, has been diagnosed with Type 1 Spinal Muscular Atrophy (SMA), a genetic disease which prevents people of their physical strength and affects the motor nerve cells in the spinal cord. It means difficulty in eating, walking and breathing. Type 1 is the most severe type of Spinal Muscular Atrophy.
Aryan cannot eat from his mouth directly, so he needs to be fed through a tube and requires a machine to help him fill his tiny lungs at night.
Currently, he is on a therapy called Spinraza, which hasn’t significantly improved his condition and requires regular spinal injections.
There is a treatment available, which is called Zolgensma, which works on the protein gene and is a once in a life time injection and is given in either the arm or leg. This treatment is described as life changing.
Aryan needs this treatment before he’s two-years-old for it to work.
The drug, which is not approved in Canada, is also known as one of the priciest drugs in the world — the one-time treatment in the U.S. will cost them about CA$2.8 million.
“That treatment can help Aryan to get his normal life,” said Gaganpreet.
Now, Aryan’s family has raised more than $2.8 million through their online fundraiser – Aryan’s Fight Against SMA.
Aryan’s parents say they are thankful for the community’s support.
The family says donations started off slowly but took off after celebrity Neeru Bajwa, a Canadian-born Indian actress, director and producer, began supporting the cause.