Surrey family raising $2.8 million to treat infant son's rare genetic disorder

Aug 5 2020, 5:59 pm

A Surrey family is appealing to the community in hopes of raising enough funds for a life-saving treatment for their infant son.

The family of one-year-old Aryan Deol has started a fundraiser in hopes of raising $2.8 million dollars for their son who was diagnosed with Spinal Muscular Atrophy (SMA).

SMA is a genetic disease which impacts physical strength and affects the motor nerve cells in the spinal cord, taking away the ability to eat, walk and breathe.

Aryan was born on August 7, 2019, and was two-and-a-half months premature. He diagnosed with the most severe kind of SMA, Type 1, in January 2020.

His family says Aryan is “an adorable, loveable, sweet and charming baby who is loved dearly by his friends and family.”

A medication known as Zolgensma can help save Aryan’s life and it must be administered as soon as possible.

Zolgensma comes with a USD $2.1 million price tag — currently the costliest drug in the world. It’s approved for use in the US, Japan, and parts of Europe but isn’t yet available for use in Canada.

“As parents it is devastating knowing that there is a cure out there and that we may not be able to afford it for our child,” says the GoFundMe.

“We are requesting our community, family and friends and everyone willing to help donate or share our page as every share and donation will make a difference and will bring baby Aryan that much closer to this life-saving medication he desperately needs.”

Vancouver baby also in need of help

Although SMA is considered a rare disease, there’s another baby not far from Aryan in Vancouver who is also in need of the life-saving treatment.

Baby Lucy was diagnosed with SMA earlier this year and her parents are looking to raise $3 million to import Zolgensma from the US.

“It’s very vulnerable, putting your life story hopes and fears out there into the community,” Lucy’s mother, LauraVan Doormaal, told Daily Hive in July. “It’s hard asking for help, especially [from] strangers. But we know it’s not something we can do alone.”

Why are rare disease treatments so expensive?

Dr. Millan Patel, co-founder and chief medical officer of Vancouver-based Rare Disease Foundation, said that unfortunately, the current pharmaceutical research and development system is costly to navigate, which can translate to prohibitively expensive drugs for patients with rare diseases.

When the whole process of researching, developing, and running clinical tests on a new drug to bring it to market can take up to 15 years, pharmaceutical companies face pressure to recoup their costs in the first two years before their patents run out and generic versions of the drug enter the market, Patel explained.

With rare diseases, pharmaceutical companies often set the unit price very high because there’s such a small market for the product.

“As a funder, if you’re in charge of the pharma budget, are you going to treat a hundred kids with a rare disease or take same amount of money and treat 40,000 people with mental health disorders? That’s the decision funders have to make,” he said.

A rare disease is defined as an illness or disorder that affects less than one in 2,000 people. Although on their own rare diseases are uncommon, collectively they affect many Canadians, Patel said. There are over 7,000 rare diseases, and one in 12 Canadians has one, he said.

His foundation tries to jumpstart research into cures for rare diseases, and looks at other drugs that are already approved to see if they can be repurposed for rare disease treatment.

“The ethics of putting $200 billion a year of drug development money into common diseases, many of which are lifestyle diseases, and abandoning the children who have no choice through no fault of their own — is it a good moral choice to make as a society?”

For more information or to donate, visit Aryan’s GoFundMe page.

With files from Megan Devlin. 

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