REGINA — What started as heartbreak for the Gill family has turned into a journey to help other families facing similar challenges.
Stalinjeet Gill and Navpreet Gill of B.C. discovered their three-year-old son, Gurmoh, was diagnosed with Spastic Paraplegia, a rare disease that causes mobility and speech impairments.
“Once we found out about it, we were heartbroken,” explained Stalinjeet.
Hours after learning about Gurmoh’s diagnosis, the couple began researching Spastic Paraplegia and discovered universities were already working toward finding a cure, including McGill University.
“Their lead doctor on the case, Dr. Zin Gan-Or, told us it would take $8 million to research, test and do a gene therapy,” said Stalinjeet.
Gene therapy modifies, replaces, or repairs a person’s genes to treat or cure diseases.
To help raise the funds, the couple began organizing rallies across British Columbia, along with GoFundMe campaigns and other fundraisers, collecting more than $2.6 million as of Tuesday.
While working to raise money for their son’s treatment, the couple realized their situation was shared by many other families.
“We saw a lot of families struggling. Canada alone has 3.2 million people with rare diseases, so it’s more common than we think,” said Stalinjeet.
The turning point came after a heartfelt plea from Gurmoh’s five-year-old sister.
“She wrote on a sticky note that said, ‘Mom, Gurmoh needs help. Please help our Gurmoh.’ And she asked her mom to put it at the highest point in the world where everybody can see that sticky note and provide all the help that he needs. So that was very emotional to us.”
That idea of leaving a note at the top of the world inspired the couple to begin a journey of hope, which started Saturday in Vancouver and made a stop in Regina on Tuesday evening at the Sikh Society Regina.
Through travelling across the country, the couple plans to deliver thousands of letters to the doorstep of the Prime Minister’s Office in Ottawa on Aug. 11.
“These people are coming and delivering the letter and ringing the bell of hope as a symbolic gesture to reach those ears who are decision-makers in this country,” said Stalinjeet.
The letters are intended to encourage change in decisions made by the Canadian government, including greater investment in treatments for rare diseases.
“Invest in health, saving these people so they become working citizens who would help Canada grow rather than becoming dependent on the system, increasing the healthcare cost,” said Stalinjeet.
He added, “If scientists are ready, if there’s a chance for someone to survive, to grow up, to live a normal life, why not provide it to them?”
Stalinjeet is hopeful the campaign will also lead to the federal and B.C. governments providing funding for the gene therapy.
Once the full $8 million is secured, the year-long process to develop the treatment will begin.
“They’re going to genetically engineer it, test it on mice and monkeys who have acquired the same disease, and they should have the injection ready by next summer.”
Stalinjeet remains hopeful the therapy will work for his son and that treatments like these will become more common across Canada.
Gurmoh dreams of one day becoming a firefighter, something his father hopes will be possible with the gene therapy.
“He’s a very happy kid; he’s loving, and we hope he can do something he loves one day.”
