Saskatoon couple seek 'miracle drug' to save daughters

A Saskatoon couple has started a crowd funding campaign, trying to raise more than $350,000 to pay for a drug to treat a genetic disorder attacking their children.

It could be a year of loss … but it doesn't have to be that way.- Richard Nataraj

"It really is a miracle drug," Richard Nataraj told CBC Radio's Saskatoon Morning.  

The disorder, Spinal Muscular Atrophy (SMA), kills nerve cells and the result is muscle wasting.

• Manitoba parents wait for potentially life-saving drug for kids with spinal muscular atrophy

Rapid decline

Nataraj said the spectre of SMA arrived in their home when their 13-month-old daughter Georgia began to show signs that her mobility was deteriorating.

He recalled that Georgia was "unable to pull up in her crib, unable to crawl, unable to furniture walk and just didn't want to stand anymore."

SMA also affects Nataraj's other children, Charlotte and Thomas.

Richard and his wife Crystal confirmed the diagnosis in Charlotte through amniocentesis, but said terminating the pregnancy was not an option for them.  

Still, the news was not easy to take, leaving the couple with feels of "shock, disbelief, grief, anger, all of those things"

Nataraj said that SMA has taken its toll on Georgia, now six-years-old, stealing her ability to walk. It even makes breathing difficult for the girl leaving her susceptible to respiratory infections.

Promising new drug

The family now turns to the drug Spinraza, which is approved for use by Health Canada, but are not yet covered. 

And if they need evidence of the drug's promise they need only look over to one-year-old Thomas, who has been involved in trial use of the drug since he was just days old.  

"He is not walking, but running — he's very active," said Nataraj.

The Saskatoon family thinks it could be a year or so until governments begin covering the cost of the drug, but as they wait their daughter's muscles continue to weaken.

That's why they've started this crowd funding campaign that they have dubbed "The Year of Miracles." The drug could help their middle child keep walking, and their eldest to breathe easier.

"It could be a year of decline. It could be a year of loss … but it doesn't have to be that way," said Nataraj.