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Parents of young Springbank girl march to bring awareness of ‘silent disease’

Family of Springbank girl stricken with kidney disease marches to raise awareness of ‘silent disease’
WATCH: This spring, the parents of five-year-old Alysha Somji were shocked to learn their daughter had been living with kidney disease for years before she was diagnosed. Now they’re taking part in the 11th annual Kidney March to help raise funds and awareness for kidney research. Deb Matejicka reports.

It doesn’t take much to spot the differences between fraternal twins Alysha and Nicholas Somji.

It’s what nobody, not even their parents could see, however, that really separates the five-year-old siblings from Springbank.

“We had no clue that when we went into the emergency at the Children’s Hospital that we would be told our child had four per cent kidney function,” said mother Robin Somji, recalling the day back in May she and her husband, Feisal Somji, rushed Alysha to the Alberta Children’s Hospital because of a distended belly and puffiness in her face.

There were very few warning signs their daughter’s kidneys were failing and as they would quickly learn, even fewer answers as to why.

“A lot of it is unknown still and we wish we had more answers and I think there’s just that much more research that needs to be done,” said Feisal.

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“It’s more common than we all know,” added Robin.

GNM celebrates Kidney Health Month
GNM celebrates Kidney Health Month

In fact, one in ten Canadians live with kidney disease. Most aren’t even aware they have it until it reaches a more advanced stage, like it did with Alysha.

“It’s a truly silent disease, as we found out from Alysha, we had no clue, and she’s had this disease for a very long time they’re (doctors) sure,” said Robin, who has already started the process of becoming a donor for her daughter.

The Somji family has also decided to walk in this year’s Kidney March to help raise funds and awareness for kidney disease.

“If we can help so that families in the future don’t have to go without answers…I think that’s a benefit for everybody, ourselves included,” Feisal said.

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“We, every year, have incredible research projects to advance the treatment of kidney disease and also, to bring us that much closer to a cure,” Joyce Van Deurzen, Southern Alberta Executive Director of the Kidney Foundation of Canada, said. “There’s been so many advances and Kidney March has been a big part of that.”

Since its debut 11 years ago, the March has raised well over eight million dollars. Those funds have gone directly to kidney research, organ donation awareness and to provide direct support to those living with kidney disease.

“That’s what Kidney March is all about,” said Van Deurzen. “People coming together to make a difference in the lives of people with kidney disease and to make a different future.”

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With the news of their daughter’s diagnosis and what it means – Alysha will be on dialysis for 16 hours every day until she can get a transplant and will then be on medications the rest of her life – the support the March and those close to the Somji’s have provided means the world to them.

“To have the support and the care and the prayers of so many people has really gotten us through this,” said Robin choking up.

“It has carried us,” she said.