Community sending two determined ladies to Las Vegas

Tyler
Tyler Clarke
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Alicia Mihilewicz and Kama Soles, from left, are seen at a fundraiser at Midtown Hall on Saturday to send the two to the National Ataxia Foundation’s annual conference in Las Vegas -- a conference that will better inform them about the condition they both have. 

When Alicia Mihilewicz and Kama Soles learned about a National Ataxia Foundation conference in Las Vegas, nothing was going to stop them from going.

 

“We know that once they’ve set their mind to something, there’s no stopping,” Alicia’s father Barry Mihilewicz said. “They’re determined young ladies, believe me.”

Both Alicia and Kama have Friedreich’s ataxia, a rare hereditary neuromuscular disease that can result in muscle weakness, loss of co-ordination, visual, hearing and speech impairment, curvature of the spine and fatigue.

Alicia, 26, was diagnosed with the condition when she was 10 years of age. Kama, 36, was also diagnosed with the condition at the age of 10.

Amazingly, despite Friedreich’s ataxia affecting roughly one in 50,000 people, both women are from Prince Albert and both lived in Saskatoon’s Cheshire Home for about seven years.

“They both lived there together for about six-seven years, in the same building, literally 30 feet apart,” Barry explained.

“Kama is 10 years older than Alicia, so I think that Alicia has looked to Kama for some support, and Kama looks to Alicia to lift her spirits. They help each other,” Kama’s mother Carol Soles said.

Both women have overcome the medical challenges they face by earning post-secondary degrees, with Alicia’s recent degree in psychology following in Kama’s footsteps. Kama boasts a master’s degree.

“I can’t just sit and watch my body deteriorate while my spirit remains strong,” Kama wrote in a slide that appeared during a fundraiser at Midtown Hall on Saturday. “I try to make an impact on those who allow me into their lives.”

A few months ago, both women learned about a National Ataxia Foundation conference in Las Vegas, to be held from March 21-23.

Like their post-secondary education, getting to the conference poses a unique challenge, with both women requiring two extra people to help them through the conference.

“Both of them need assistance to get out of bed, to eat, to do everything … and somebody to take them to the conference,” Barry explained. “So to travel with either one of them, they basically need two people to travel with them.”

We know that once they’ve set their mind to something, there’s no stopping Barry Mihilewicz

With three airplane tickets apiece and more expensive handicap accessible hotel rooms, the bill to attend the conference comes to between $5,000 and $6,000 each.  

As such, a Saturday fundraiser at Midtown Hall was organized, by the end of the evening raising between $9,000 and $10,000.

“This is Prince Albert,” Barry said on Sunday, adding that he had no doubt the event would be a whopping success.

“The support has been overwhelming. I love Prince Albert … and it’s the best city in the world, bar none.”

Accompanying Saturday’s fundraiser was a long list of individual, commercial and group donors -- a large group of whom Barry said that he wanted to thank every individual.

With their plane tickets already purchased, Alicia and Kama are clear to attend the conference, during which Barry said that both young women will be attentive students.

The conference will include ”some of the top neurologists in the world -- the people who are administering research,” Barry explained, noting that both women will learn more about the latest treatments available, which may prove beneficial in the long run.

Kama has recently moved to the Sherbrook Community Centre, a level four care home in Saskatoon. Alicia plans on joining her at some point, and is currently on a waiting list for the facility.

Although Saturday’s fundraiser was a great success, and despite donations continuing to stream in, Barry said that they might remain shy of their final goal.

Those interested in lessening the financial burden on Alicia and Kama can contact Barry at 306-961-8034 or Carol at 306-981-7718. 

Organizations: Prince Albert, National Ataxia Foundation, Sherbrook Community Centre

Geographic location: Las Vegas, Saskatoon

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