GoFundMe account set up for Jennifer Kuzmowich, who has lost almost 90% of her eyesight to Leber’s hereditary optic neuropathy
The community is rallying to support a Coldwater woman who suddenly lost most of her eyesight due to a rare disorder.
Jennifer Kuzmowich, who runs Bluewater Fitness, “is a devoted mom, wife, small business owner, and internationally qualified bodybuilder,” notes a GoFundMe page created to support her.
“At 46, she went from running her business and caring for her family to suddenly losing 90 per cent of her vision and her independence.
“Just 16 weeks ago, Jennifer Kuzmowich could drive, read, help her children with homework, and train clients in her fitness studio. Today, she can see only shapes and shadows. Her life, and that of her family, has been turned upside down.”
In July, Kuzmowich was diagnosed with Leber’s hereditary optic neuropathy, a rare genetic condition that attacks the optic nerve and blocks central vision. She also carries a rare MT-ND1 mutation that excludes her from most gene therapy trials in the world for Leber’s hereditary optic neuropathy.
With no approved treatments in Canada, Kuzmowich’s doctors have recommended idebenone. That drug has been approved for Leber’s hereditary optic neuropathy in Europe and the United Kingdom, but it must be ordered from the United States at a cost of about $400 (Canadian) per month. Doctors have recommended she take the drug for at least two years, despite its effectiveness not being guaranteed.
Kuzmowich and her family are also holding out hope for a new therapy called repetitive transorbital alternating current stimulation, which is currently in clinical trials at Stanford University, the Wills Eye Institute and New York University. She hopes to access a trial in the U.S., but if she can’t, she might need to travel to Germany, which will cost more than $20,000 for two weeks, including flights, hotels and meals, “not to mention lost income for Jenn’s husband, Derek, who has taken reduced-pay leave to care for her and their daughters,” the GoFundMe page states.
“Jenn and her family have tried their best to shoulder all the expense, but it has become an impossible and disheartening endeavour. Therefore, we, her support group, have made the necessary decision to ask for help.”
The family has already covered the following costs:
$5,000-plus for diagnostic testing and specialist appointments
$2,400-plus for a six-month supply of idebenone
$1,000-plus for specialized smart glasses for the blind
$2,000-plus for travel to Toronto, Ottawa and Sudbury for appointments
The goal is to raise $24,000. As of Thursday evening, more than $13,000 had been raised.