Monday, July 18, 2011

Mother raises awareness about son's rare disease

A local mom is determined to raise $2,000 by the end of the summer to help find a cure for her son’s rare disease.

Jennifer Ruklic’s three-year-old son Carter has hemophilia; an inherited disorder in which one of the proteins needed to form blood clots is missing or reduced. Hemophilia is passed down from mothers to sons in the X chromosome.

Ruklic is determined to raise the money for the Canadian Hemophilia Society’s Million Dollar Club with three bottle drives in Airdrie and Calgary over the summer.

Ruklic and her husband first discovered Carter had the disease after he was circumcised and bled an abnormal amount. Since then, the boy has had weekly injections of a clotting agent to ensure he doesn’t have internal or external bleeds.

“I want Carter to go through life as a normal little boy and finding the cure in his lifetime is the only way to do that. I can’t do that without the help of the public and their donations,” said Ruklic.

Ruklic recently created the charity Carter’s Quest for a Cure and is in the process of registering it. She is also the secretary for the Southern Alberta chapter of the Canadian Hemophilia Society.

“This has definitely made me more of a public speaker,” she said.

“Before this, I was a shy and quiet person. It’s not my privilege to be quiet anymore. I need to speak up and be my son’s voice and find a cure.”

Carter is part of a group of severe hemophiliacs with less than one per cent of the normal level of factor VIII or IX in the blood. The group has several hemorrhages a month and the bleeding is often the result of a minor bump or twist. Sometimes, there is no apparent cause for the bleeding.

Hemophilia A affects fewer than one in 10,000 people, or about 2,500 Canadians. In about 30 per cent of cases, there is no family history of the disorder and the condition is the result of a spontaneous gene mutation.

Ruklic said although it has been a challenge, it is getting easier because Carter can now tell her when he hurts himself.

“He is no longer wearing the helmet we had him in when he was a toddler and that really helps because he doesn’t get the sideways looks or the questions from other kids anymore,” she said. “However, he sees other kids playing and being so carefree and he is used to me being close to him and watching his every move. He’s more cautious than other kids but we try to keep things very normal for him.”

If you would like to donate bottles to the cause, drop them off in the driveway of 951 Windsong Drive marked with ‘Carter’s Quest’ or at Fox Springs Landscaping at 304-2903 Kingsview Blvd SE during the month of July. To learn more about the disease, visit the Canadian Hemophilia Society website at or Ruklic’s website

Local mother raises awareness about son's rare disease | Acv - Local Entertainment | Airdrie City View

In the United States, refer to for the National Hemophilia Foundation.

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