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Gage Luskey shows his perseverance

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Jeanette and Gage Luskey hold the cake that they created for a bake sale at Pleasantdale School on December 13. Proceeds from the bake sale will go to the national Niemann-Pick Foundation; Gage was born with Niemann-Pick, which is a rare condition.

A local family has been building awareness, and raising funds, for an extremely rare condition that has affected their son since birth.

Gage Luske, the son of Jeanette and Chris Luske, is a Grade 5 student at Pleasantdale School in Estevan. He was born with Niemann-Pick Disease, a condition that Jeanette describes as childhood Alzheimer's.

Jeanette said that Gage is likely the only child in Saskatchewan with the condition, and one of about 10 children in Canada with Niemann-Pick. There might only be 500 Niemann-Pick cases in the world.

There is no cure for the disease, but there are some treatments being developed to delay the onset of the associated health challenges.

Gage was born in St. Albert, Alberta, and Jeanette said the doctors knew that something was wrong once he was born. He had a very large stomach at birth, and at one point he had to be resuscitated.

Jeanette says that Gage was lucky to survive those first few days.

He was airlifted to the Stollery Children's Hospital in Edmonton, where he would undergo a battery of tests over the next six months.

"It's a very hard disease to diagnose," said Jeanette. "Most doctors don't even know what this disease is, because they've never heard of it, it's so rare."

Gage was also born with an enlarged liver and spleen, and had severe jaundice – three of the early symptoms of Niemann-Pick.

Doctors collected some of Gage's skin cells, and sent them to the Mayo Clinic in Rochester, Minnesota, where the cells were grown and Niemann-Pick was diagnosed.

Gage has Type C, which is a mid-range form of Niemann-Pick. The most serious form of the disease, Type A, leaves a child with a life expectancy of about three years.

"It's a genetic, metabolic storage disorder, and it affects the naturally-forming cholesterol in the body," said Jeanette. "His body cannot regulate his natural cholesterol like you and I would. It creates a plaque … on the brain, just like you get plaque on the teeth.

"As that plaque builds up on the brain, the nerve receptions shut down, similar to Alzheimer's."

The first five years of his life were challenging, she said, because Gage required frequent doctor and specialist appointments. It took a long time for him to speak; initially, he used sign language to communicate.

Core issues caused problems with balance and walking, and there are certain things that he can't do, such as play contact sports. A contact sport would place his enlarged liver and spleen at risk.

And now that he's older, Gage is showing signs of the childhood Alzheimer's element of Niemann-Pick. He occasionally suffers from memory losses, Jeanette said. As he gets older, he'll lose his ability to walk and to talk.

But Jeanette says that Gage is doing better now than he ever has previously. He has taken up archery, and Jeanette said the sport has been great for him.

"Archery is a one-on-one sport, and you're competing with yourself," Jeanette said.

One of the reasons that Gage is doing so well has been the support from his classmates at Pleasantdale, she said. The other students have rallied around him, and he even has a "posse" of friends, she said.

"It's like he has classroom full of big brothers," said Jeanette. "If anything happens, they come running, and they ask what's wrong with Gage."

At first, his classmates couldn't understand why Gage would be emotional, or become easily upset, if he wasn't able to remember something.

"Now they understand more about Niemann-Pick, which is part of the awareness campaign," said Jeanette.

He receives help from the school for reading, and he has physical therapists and occupational therapists who help him when he's at school.

A Purple Perseverance assembly was held at Pleasantdale on December 12. The students at the school donned purple shirts – purple is the colour of Niemann-Pick Disease – to show their support for Gage. Gage and his pals handed out purple bracelets to the other students at the school.

"He's been very brave this fall, coming out and educating everyone about his disease," said Pleasantdale principal Michelle Smart.

The principal said that despite the limitations associated with the disease, Gage does all sorts of things. He continues to learn and grow. He's happy, he has a smile on his face, he's a friend to so many students, and he's a fine a representative of the school.

Gage said that when he saw his classmates dressed in their purple shirts at the assembly, it was a wonderful feeling, and that he was very proud of everyone at the school.

His mother was also touched by the assembly.

"I loved it," said Jeanette. "Mrs. Smart knew exactly what to say and how to say it. She didn't want to throw a lot of hardcore details out to the young ones.

"It was a sea of purple. They were just awesome. And everybody here was just so supportive. It was hard to stand there and not cry."

Pleasantdale also donated the funds from the sale of its Christmas tree at the Estevan Shoppers Mall's inaugural Trees for Growth fundraiser to the Niemann-Pick Foundation.

Gage and his mother held a bake sale at the school on December 13 to raise money for the fight against Niemann-Pick Disease. Not only did they have a variety of items, but they had a cake inscribed with "Purple Perseverance," which incorporated Niemann-Pick's official colour, and the "Persevere for Life" slogan for the Canadian Chapter of the National Niemann-Pick Disease Foundation.

Jeanette wants to create as much awareness as possible about Niemann-Pick, and that's why she refers to it as childhood Alzheimer's.

"It helps people relate to what he's going through now," said Jeanette.

The Niemann-Pick Disease Foundation's national head office is in Toronto. They're tackling important research, Jeanette said, and they use the money that they receive for assistance for children and families, and for research to find treatments and a cure.

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