One Small Step

Bonnie Learning
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Fundraiser for Prader-Willi raises money and awareness

It was a great turnout on a beautiful day, as over 30 people came out to Steve’s Playground in Happy Valley-Goose Bay on Aug. 16, to support a local family in their fundraising efforts for ‘One small step’ – a national fundraiser for research into Prader-Willi Syndrome.

Kalan Simms, 7 — the oldest daughter of Kristin and Damien Simms — is afflicted with the disorder.

“Kalan was diagnosed with Prader-Willi when she was one month old,” recalled Damien.

“When she was two weeks old, she was almost literally starving to death, so we had to take her to the Janeway for treatment.”

According to mayoclinic.org, “Prader-Willi syndrome is a rare disorder present at birth that results in a number of physical, mental and behavioral problems. A key feature of Prader-Willi syndrome is a constant sense of hunger that usually begins at about two years of age.

“People with Prader-Willi syndrome want to eat constantly because they never feel full (hyperphagia) and usually have trouble controlling their weight” the website stated. “Many complications of Prader-Willi syndrome are due to obesity.”

The website noted symptoms of Prader-Willi include poor muscle tone, lack of eye coordination, and poor sucking reflex in infants.

“Kalan needs to have needles six days a week in order to metabolize the food she eats,” said Damien.

“If not, all the food she eats would just turn to fat, instead of muscle.”

He noted because of Kalan’s hyperphagia, she has to follow a strict diet.

“She’s more restricted on what she can eat than most diabetics,” he said.

“We also have to keep the fridge and pantry locked, so as to keep her away from temptation.”

Kristin said Kalan’s motor skills and speech development have come a long way over the years with rehabilitation and therapy, and she’ll be going to grade one this September.

“She can count to 10, and write her own name. She has just realized this year what this fundraiser is all about,” said Kristin.

Those who participated in One Small Step gathered pledges prior to Aug. 16, and walked from Steve’s Playground, on the bike trail to Tim Horton’s, then back to the playground.

With a kick start of $4,000 from Scotiabank — a national supporter of One Small Step; monies raised by the Simms’s family via recycling efforts; a silent auction the day of the walk and pledges raised, the day’s efforts netted over $10,145.00.

“Our goal was $10,000,” said Kristin, who noted this was the third year for this fundraiser locally.

“Each year, I’ve kept raising the goal, from $5,000 to $7,500, and this year to $10,000. So to have surpassed that goal is great. And we’re still expecting more donations.”

Cameron Colbourne, a friend of Kalan’s received a prize for the most money raised in pledges, raising $881.00 in support of his friend.

“He really enjoys taking part in this fundraiser,” said his mother, Sheryl Colbourne.

“We’ve been friends with Damien and Kristin for years, and Cameron and Kalan have grown up together. This year, he actually raised all the money himself.”

Damien is pleased with all the support his family has received and expects One Small Step in Happy Valley-Goose Bay to get bigger and better every year.

“We want to thank everyone who took the time to come out this year, it’s really appreciated.”

 

bonnie.learning@tc.tc

Organizations: Scotiabank

Geographic location: Happy Valley, Goose Bay

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