{"id":610840,"date":"2026-04-17T19:32:08","date_gmt":"2026-04-17T19:32:08","guid":{"rendered":"https:\/\/www.newsbeep.com\/ca\/610840\/"},"modified":"2026-04-17T19:32:08","modified_gmt":"2026-04-17T19:32:08","slug":"surrey-parents-turn-to-academics-to-save-their-son-from-a-rare-disease","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ca\/610840\/","title":{"rendered":"Surrey parents turn to academics to save their son from a rare disease"},"content":{"rendered":"

Two Surrey parents are seeking help from academics and the community to save their son, who has an extremely rare disease.<\/p>\n

Three-year-old Gurmoh loves listening to Wheels on the Bus and dancing to Baby Shark, like any other child. He loves to drive his toy fire truck, dreaming of becoming a firefighter when he grows up.<\/p>\n

But his parents, Navpreet and Stalin Gill, say they discovered about a month ago that Gurmoh has a rare disease called spastic paraplegia.<\/p>\n

According to the U.S. National Institute of Health (U.S. NIH), hereditary spastic paraplegia is a group of rare and progressive disorders that cause weakness and stiffness of the legs.<\/p>\n

However, Gurmoh\u2019s particular case is caused by a de novo mutation that does not have an approved therapy.<\/p>\n

In fact, he is the only child with this variation of a rare disease, SPAST c.1496 G>A (p.Arg499His), in Canada, and as such, government funding for his gene therapy is largely unavailable.<\/p>\n

The parents say that every second, the disease is causing irreversible damage to their son\u2019s nerves.<\/p>\n

Community steps up for Gurmoh<\/p>\n

On April 8, with hopes of receiving help from the community, the Gills launched a GoFundMe campaign<\/a> to fund the gene therapy that can save their son. About a week later, they received nearly $500,000 of the $2.7 million required to initiate the development of the therapy.<\/p>\n

\u201cPeople can feel our pain,\u201d Navpreet said. \u201cThey\u2019re parents, they have kids. So they feel what you\u2019re going through.\u201d<\/p>\n

\u201cThat is what\u2019s keeping us going.\u201d<\/p>\n

The Gills say researchers at McGill University are thankfully working to develop a personalized gene therapy, led by Dr. Ziv Gan-Or, director of clinical research at The Neuro.<\/p>\n

\"\"Gurmoh\u2019s father Stalin Gill (left) and mother Navpreet Gill (right). (OMNI News Image)<\/p>\n

On the funding website, Gurmoh\u2019s parents said saving him from the disease that destroys his nerves will be impossible without getting funding in time. The therapy, they say, requires $6-8 million to cover research, pre-clinical, and clinical phases.<\/p>\n

Early stages of the gene therapy depend heavily on patient and philanthropic funding, while later stages may receive support from the government, the campaign website reads.<\/p>\n

On April 15, Navpreet and Stalin travelled to Montreal to discuss matters with the researchers at McGill and others from the U.S. to share their struggles and challenges.<\/p>\n

\u201cDue to the rarity of his condition\u2014he is the only known case in Canada\u2014treatment must be developed for his specific mutation within the SPG4 category,\u201d said the Gills on their website.<\/p>\n

Parents\u2019 worst nightmare<\/p>\n

Gurmoh\u2019s parents say he started to show symptoms, such as being unable to stand independently without holding on to anything, around the age of one.<\/p>\n

He was diagnosed about a month ago.<\/p>\n

The symptoms of the genetic disorder, according to the U.S. NIH, include mobility issues and stiffness in the legs, which can worsen to the point of reliance on a cane, walker, or wheelchair.<\/p>\n

Following the discovery of her son\u2019s illness, Navpreet felt the worst feeling ever as a parent.<\/p>\n

\u201cGetting to know a condition is one thing, and getting to know it\u2019s something that has no cure [is another]. And it\u2019s going to keep on getting worse,\u201d she said.<\/p>\n

Government\u2019s unavailability<\/p>\n

On top of the community\u2019s contribution via the GoFundMe campaign, Navpreet and Stalin reached out to the provincial and federal governments, only to receive a disappointing response.<\/p>\n

Navpreet says the federal government advised them to reach out to a list of other departments. RareKids-CAN, a federal department that helps children with rare diseases, offered to help with the documentation needed to get federal funding for the last two stages of the therapy.<\/p>\n

A letter from the B.C. government\u2019s health ministry to Navpreet and Stalin said it was unable to provide research funding through the National Strategy for Drugs for Rare Diseases (NSDRD) or through other avenues at the moment.<\/p>\n

The funding for the gene therapy, Stalin says, will be a benchmark for Canada since it will help thousands of families.<\/p>\n

1130 NewsRadio reached out to the provincial and federal governments for further comment. Health Canada redirected 1130 NewsRadio\u2019s request to the B.C. Ministry of Health.<\/p>\n

\u201cThe Ministry has active initiatives intended to simplify the process of initiating clinical research in the province with the aim of attracting more cutting-edge research into B.C. so that patients can benefit from participation in clinical trials closer to home,\u201d said a statement from the province.<\/p>\n

Now, Stalin and Navpreet are counting on the academics and their community members to get the funding needed.<\/p>\n

Don\u2019t worry, Gurmoh: Mom and Dad<\/p>\n

The diagnosis of the disease, Stalin says, was around the time of the tragic Tumbler Ridge shooting in B.C., which took the lives of 9 people.<\/p>\n

Stalin says his heart went out to the parents who could not save their children during the shooting.<\/p>\n

\u201cIf the parents were with their son or their daughter, they would hide [their children] from bullets and take the bullets on their chest,\u201d he said.<\/p>\n

\u201cI have all the opportunity to help save my son. I\u2019m going to leave no stone unturned. I\u2019m going to make sure I knock on all the doors possible.\u201d<\/p>\n

Stalin and Navpreet say they will be Gurmoh\u2019s greatest advocates and will do whatever it takes to save him.<\/p>\n

Their heartfelt message to their son?<\/p>\n

\u201cHe doesn\u2019t need to worry, and we will figure it out. He\u2019ll be fine. It\u2019s our responsibility as parents. We brought him into the world.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Two Surrey parents are seeking help from academics and the community to save their son, who has an…\n","protected":false},"author":2,"featured_media":610841,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[194299],"tags":[49,48,87674],"class_list":{"0":"post-610840","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-surrey","8":"tag-ca","9":"tag-canada","10":"tag-surrey"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/610840","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=610840"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/610840\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/610841"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=610840"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=610840"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=610840"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}