THE Kirkland Kilbride RESEARCH FUND

Meet Kelly Kilbride

"It's not natural to see children sick and dying.  When they are healthy, it's a sign that everything is right in the world". 

For a parent of an ailing child, there is no pain worse than watching their little one contend with a fatal illness.  Spirits are easily extinguished.  Heartache is incomparable, while the coming days seem awfully unpromising. That’s how Kelly  Kilbride first felt when her baby boy, Kirkland, developed mitochondrial disease. Having no known cure, the disease can severely affect all cells in the body, including those of the brain, heart and muscles. Many sufferers experience  respiratory problems and 24-hour seizures. They may not be able to speak or hold  their head up. Today, five-year-old Kirkland is in palliative care.  His prognosis is poor. SickKids’ care of her son, however, has been “phenomenal,” Kelly asserts. Treatment of his multiple symptoms has given her son a decent  quality of life, however transitory.

“When you have a  child with a disease like this, you can lose friends rather quickly, because  they may feel guilty and intimidated. Nonetheless, people have had the capacity  to enter our lives, while others have returned to show their support. It’s just  incredible,” says Kelly, no longer fearing and loathing.

Refusing to allow “monstrous mitochondrial disease” to further devour her spirit, Kelly is fighting back with feasible weaponry: philanthropy. She helped spearhead the Mito March: Kure for Kirkland in Georgetown, Ontario in 2005 – a fundraising endeavour that has grown exponentially since its first year.
 
“With financial  support, the hospital may very well employ the smartest, most dedicated doctors  and scientists in the world, whose knowledge and capabilities know no  boundaries. I believe that philanthropy has played an important part in establishing SickKids’ legacy. It has lead to ‘miracle kids’ walking out its doors each day,” says Kelly, who is relishing her new role as spokesperson for Kirkland’s sickness. 

Copyright
© 2007. SickKids Foundation. All  rights reserved.   

The Metabolics Laboratory at SickKids Hospital

The proceeds from the 2006 Mito March were used to fund a scientific study conducted in the Metabolics Lab at SickKids Hospital.

This project involved costs not easily financed by traditional funding sources. 

Scientists are analyzing the DNA of sibling pairs from different families with Complex One Deficiency- a rare mitochondrial disease. By employing methods very similar to the ones used by the SickKids researchers who found the gene responsible for Cystic Fibrosis, metabolic scientists are mapping out and identifying mitochondrial genes that are common to both siblings. These common genes are in turn, linked to the genes shared by siblings from other families with the intention of narrowing down the location of defect and eventually pinpointing the specific gene responsible for Complex One Deficiency.

It is hoped that this study will provide a window into what the real genetic causes might be therefore, having profound implications for diagnosis, prenatal diagnosis and treatment of those families affected by this disease.

Mito March supporters share pride in knowing that their efforts are bringing a much welcomed hope to those who suffer from the fatal effects of this disease.