Jada Halkett, who has one of 150 known cases of Salla disease, sits with her caregiver Sheldon Merriman. (Derek Cornet/larongeNOW Staff)

By Derek Cornet

Rare disease

A Star for Jada fundraiser to raise cash for rare disease research and cure

Feb 21, 2019 | 4:54 PM

A six-year-old girl living in the tri-community with an extremely rare disease called Salla needs the public’s help to raise funds to find a treatment or cure for the debilitating condition.

Residents are invited to A Star for Jada fundraiser to be held Feb. 28 at the Jonas Roberts Memorial Community Centre starting at 5:30 p.m. The event will include a pulled pork and coleslaw supper, live music and a silent auction with all funds going toward Salla research on behalf of Jada Halkett. She was diagnosed with the disease last year and is only one of 150 known cases worldwide.

“It should be a fun night to raise some funds for this research and hopefully find a treatment or a cure for Jada,” said organizer and caregiver Sheldon Merriman. “We’re hoping for a good turn out because we want to raise some money to be able to send to partner with other families.”

With a $10,000 goal in mind by June, Merriman wants to send the funds to the Salla Treatment and Research Foundation to pay geneticists and researchers to begin work on the diseases. He stated the U.S.-based non-profit wants to raise $300,000 in total, adding $91,000 has already been collected. If Merriman is able to reach his goal, the organization will have enough money to pay for the first year of its three-year plan.

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Merriman said Salla is a autosomal progressive degenerative disease that affects the central nervous and muscle systems in the body due to a build up of sialic acid. Due to a genetic mutation, sialic acid is unable to be excreted from the body and leads to conditions such as low muscle tone, developmental issues, seizures, and problems with movement and balance. Merriman noted Halkett also has two brothers with the rare condition, but he doesn’t know of any other cases in the province.

“We have an appointment with the metabolic clinic in a couple of weeks and we want to see if there are any other families with it,” he said, adding he knows of five cases in Manitoba.

Merriman began respite care for Halkett starting in November 2017 and she’s currently the only child in his care due to her high needs. Halkett is only capable of taking a few steps without a walker and requires a special chair to move up and down stairs or to eat. She does, however, enjoy to sing which she’ll be doing at the benefit.

“We’ll have some of Jada’s friends who are going to come and Jada will sing with them,” Merriman said. “Jada and I will sing, then we just have different community members who have signed up and they will do a couple songs each.”

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derek.cornet@jpbg.ca

Twitter: @saskjourno