Charity Garage Sale Viola Kaiser Stony Plain rare genetic disorder

Nov 03, 2023

Stony Plain is coming together to help raise money for the Kaiser family.

Next weekend, Immanuel Lutheran Church of Rosenthal will host a ‘Charity Garage Sale’ for Heather and Jason Kaiser, whose 16-month-old daughter, Viola, was diagnosed with an extremely rare genetic disorder called Sandhoff disease last October. The family was told Viola has two to five years to live.

Led by family friend Tammy Ratke and an army of volunteers, the Charity Garage Sale will take place in the church’s gymnasium and help fund the Kaiser’s growing medical expenses. It will consist of items donated by friends and family of the Kaisers as well as a bake sale. All members of the public are invited to attend the event which will run on Friday, May 26 (9 a.m. to 5 p.m.), Saturday, May 27 (9 a.m. to 5 p.m.), and Sunday, May 28 (10 a.m. to 3 p.m.).

“The outpouring of love from all of these people has really touched our hearts. Family, friends, and even strangers have been coming together to help make this possible. You don’t really have time to think about the financial side of things when you’re just trying to get through the daily struggles of the heartache,” said Heather.

Sandhoff disease is a rare, inherited lipid storage disorder which progressively destroys nerve cells in the brain and spinal cord. It is caused by a deficiency of the enzyme beta-hexosaminidase, which results in the harmful accumulation of certain fats (lipids) in the brain and other organs of the body. It affects one in one million individuals. There is no known cure.

On Jan. 14, 2022, Heather gave birth to fraternal twins, Viola and Roderick. She is also the mother of three teenage boys from a former marriage. Within four months, Heather began to notice certain abnormalities in Viola. Unlike Roderick, she had a hard time lifting up her head, had trouble sleeping, and always appeared to be tired. While Heather mentioned these concerns to her family doctor during Viola’s regular checkups, she said she did not seem overly concerned, attributing Viola’s tiredness to her lack of sleep.

“I’ve been here before (raising babies) and I started to notice things I hadn’t with any of my other children,” said Heather.

By seven months, Heather’s gut told her there was something wrong. She said even strangers wanting to say hello to Viola out in public would comment, “she looks tired.” Heather returned to her family doctor who this time referred her to a pediatrician in Edmonton in order to put her mind at ease.

In September 2022, Viola underwent a regular pediatric exam as well as a blood exam and an MRI exam. The Kaisers heard nothing for two weeks which they interpreted as a good sign; then the phone rang the morning of Tuesday, Oct. 4, 2022. On the other end of the line was the pediatrician who told Heather and Jason to immediately come to his office with a “support person.”

“At that point, I realized something was really wrong. There were a lot of feelings going through my mind trying to figure out what it could be,” said Heather.

Initially, the Kaisers thought Viola might have autism or cancer. When they arrived at the pediatrician’s office to find him waiting there with a nurse, Heather said her heart sank ever lower. He told them he had some “very devastating” news to report which immediately sent both parents into tears.

“I still can’t believe it. I’ve always been a very hopeful person so I never expected to hear what I heard that day,” said Heather.

While the Kaisers initially held out hope for a new gene therapy clinical trial for Sandhoff disease in development at Massachusetts General Hospital, in Boston, MA, they remain in limbo as researchers continue to solicit the necessary funding. Even worse is the fact the trial favours younger candidates, meaning Viola’s chances grow slimmer with each passing day. She has already aged seven months since the Kaisers first contacted the hospital.

During this time, Viola has lost her ability to sit up in a high chair, eat and drink through her mouth, play with toys, hold eye contact, and even smile or laugh. Heather said all her daughter can really do now is lie down and occasionally move her arms and legs.

“It’s a really rare disease and the doctors just don’t know enough about it. Ourselves, along with parents I’ve talked to all over the world have not found anything else that can help these kids. This is it,” said Heather.

One glimmer of hope is a drug called Tanganil (Acetylleucine), a modified amino acid typically used in the treatment of vertigo and cerebellar ataxia. The Kaisers discovered it through their own research and even discussed its effectiveness with a family from Lebanon whom they connected with through a Facebook page dedicated to families impacted by Sandhoff disease. The family said it helped their own daughter to smile and laugh again.

With nothing to lose, the Kaisers quickly consulted a doctor in Germany who prescribed Viola two months’ worth of Tanganil. It has now been over 10 weeks since she began taking the drug and Heather confirmed it has revived Viola’s ability to smile and laugh. She also said Viola has displayed no new signs of deterioration. However, while the drug can slow the progression of Sandhoff disease, it is not a cure.

“As a parent, seeing your child smile is the best thing in the whole entire world because it makes you feel like everything is okay,” said Heather.

A GoFundMe campaign was launched by close family friend Rebecca Strass last fall in order to raise $25,000 for the clinical trial in Boston. With hope fading, Heather said the $7,935 raised to date would likely go toward paying for Viola’s eventual funeral.

In the wake of Viola’s diagnosis, Heather said parents should always trust their gut and be persistent when they think something is wrong with their child. As the Kaisers have no familial history of Sandhoff disease or any genetic disorder, neither she nor Jason ever had any reason to believe Viola’s infantile abnormalities could be so serious.

The Immanuel Lutheran Church of Rosenthal is located at 1228 Township Road 524, Stony Plain.

Those unable to attend the Charity Garage Sale next weekend are invited to make a donation to the Kaisers by visiting gofundme.com and searching “Viola Needs a Miracle.”

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