Fundraiser for A-T cure aims to beat last year’s $93K record

The family of a seven-year-old Brandon boy with a rare hereditary neurological disease is hosting their third annual fundraiser next week to help find a cure.

Parents Derrick and Jill Stewart said their son, Holden, was diagnosed with ataxia-telangiectasia in September 2021, shortly before his second birthday.

The condition is caused by a gene mutation and affects his mobility, speech and immune system.

The Hope 4 Holden golf tournament takes place June 18-19 and raises money for the A-T Children’s Project to research treatments and a cure.

“The support from the community is unbelievable,” Jill told the Sun on Friday, adding that they are trying to beat their record of raising more than $93,000 last year.

Tickets for Friday’s tournament at Glen Lea Golf Course have sold out with 42 teams participating, but people can still buy $45 tickets for the dinner at the Victoria Inn on Thursday, she said.

Derrick said it makes him emotional to think about the ways people have rallied behind them to support Holden and the cause.

He described his son as being the “happiest kid” who’s “super silly” and funny.

Children with the disease typically experience a decline in co-ordination and movement between the ages of eight and 13 and need a wheelchair, he said.

“Right now, he has a very unsteady walk … His feet kind of tend to get tangled up,” Derrick said.

“His speech can get quite hard to understand when he’s become fatigued, so you know, after a crazy travel day or whatever, it’s hard even for Jill and I sometimes to understand what he’s saying to us.”

Holden also has a greater risk of getting cancers such as leukemia in the future, he said.

The National Ataxia Foundation in the U.S. estimates the prevalence of the disease to be between one in 40,000 and one in 100,000 people worldwide.

Derrick said they only know of one other child in Manitoba with the medical condition.

The boy’s parents said they noticed Holden had an unsteady gait when he was a toddler and was falling down often, so they took him to see a neurologist in Winnipeg.

Doctors initially thought he had a brain tumour and had Holden complete many examinations to rule things out, including a nerve conduction study that measures how fast an electrical impulse moves through a person’s nerves.

“That’s probably one of the worst things that we’ve had to go through with him and, of course, all this was happening during COVID,” Derrick said.

Eventually a geneticist told them he suspected Holden had ataxia-telangiectasia based on another child’s case he had diagnosed in his career. Holden was sent for bloodwork and genetic testing, which confirmed his diagnosis.

He is monitored by a family doctor in Brandon and a neurologist and immunologist in Winnipeg.

“We feel very fortunate in the level of care we receive, and unfortunately there isn’t a lot that they can do for him right now,” Derrick said.

The family has met with doctors at the HSC Children’s Hospital to make connections and get more information on cancer as a precaution.

Holden was enrolled in a medical trial in Texas from May 2025 until the beginning of this year. He would travel to the U.S. every three weeks.

“That ended really unexpectedly at the end of January. They felt like they weren’t getting the results that they needed, and it was pretty devastating for us because we actually saw quite an improvement in him,” Derrick said.

The trial involved drawing his blood and infusing it with steroids. The formula would then be put back into his system, and the steroids would slowly release from his red blood cells over 21 to 28 days.

For the best results, Holden should have been assessed about two days after getting the infusion, but all his testing happened right before his upcoming infusion — the worst time in his cycle, Derrick said.

The doctors explained that the trial design was faulty, he said.

Now the family is looking into a drug called Aqneursa that may help to improve his energy levels and speech.

Derrick said the drug is in the process of getting approval in the U.S. and he hopes it will be approved by Health Canada officials in the future.

Although the medication isn’t a cure, the family said they will do anything to help their son.

Last month, Hope 4 Holden raised more than $5,000 through Dairy Queen locations in Brandon. This money was also donated to the A-T Children’s Project.

» tadamski@brandonsun.com