The Gill family of Surrey is fighting against time to raise enough money for a gene-editing procedure that could save their three-year-old son Gurmoh's ability to walk and talk. Gurmoh has been diagnosed with Hereditary Spastic Paraplegia Type 4 (HSP4), a rare, progressive neurodegenerative disease that causes weakness and stiffness in the legs.
Diagnosis and search for treatment
When Gurmoh was 1.5 years old, his parents Stalin and Navpreet Gill noticed he was struggling to walk on his own. Initially, doctors told them the issue would resolve itself, but Gurmoh's condition only worsened. Earlier this year, after his legs completely gave out, he was rushed to B.C. Children's Hospital and diagnosed with cerebral palsy. The family did not receive the correct diagnosis until April, when genetic testing confirmed HSP4.
"This is the only thing we have on our mind, it's all we do, all we care about," Stalin said. The family has been searching for treatment, as there is no known cure for the condition. Navpreet sent about 2,000 emails to researchers worldwide. Dr. Ziv Gan-Or from McGill University responded, offering to develop a personalized gene therapy for Gurmoh.
The gene therapy and its cost
"HSP is a rare disease found in about five out of 100,000 people. That means in Canada, there's about 2,000 patients with this disease," Gan-Or said. He noted that Type 4 is the most common form of HSP. "He is expected, as this disease progresses, to lose his ability to walk, his ability to talk, his ability to connect with people and he would be completely dependent on his environment and his caretakers."
The doctor told the Gill family that the treatment would cost up to $8 million. The family approached the B.C. and federal governments for coverage but were denied. "We were really happy, like someone is ready to make the therapy medicine within Canada," Stalin said.
Fundraising efforts
After the provincial government said it could not cover the treatment, the family started fundraising. So far, $2.4 million has been raised, nearly reaching the initial $2.7 million goal to kickstart the development of the gene therapy. Along with supporters, the Gills walked 120 kilometres from Vancouver to the B.C. legislature in Victoria from May 21 to 25. Last month, the family went to Ottawa and stood outside Parliament for three days until Health Minister Marjorie Michel met with them and said she would reach out to Health Canada.
