May Mito March seeks `Kure for Kirkland'

Last year's Mito March: Kure for Kirkland raised more than $36,000 and organizers are hoping they can bring in even more this year. The second annual fundraiser is set for Sunday, May 28, from 9 a.m. to noon, at the Gellert Community Park in Georgetown. The 5 km family walk/run is designed to promote awareness and raise funds in support of mitochondrial disease research at The Hospital for Sick Children. The event was conceived by family and friends of Kirkland Kilbride, a five-year-old Georgetown boy who suffers from a rare and fatal Mitochondrial Disease-Complex One Deficiency. "Every parent with a child like this wants there to be some purpose in his life," said Kirkland's mother Kelly Kilbride. She said the slogan of the Mito March says it all, "Let his journey have meaning." Life for Kirkland has not been easy. As a result of the genetic disorder, he has suffered from a wide variety of symptoms including poor growth, visual problems, loss of motor control, gastro-intestinal disorders, muscle weakness, developmental delays and learning disabilities, neurological problems and seizures, and susceptibility to infections and respiratory disorders. He cannot sit upright, walk or crawl. "When there's a deficiency in the mitochondria, energy-producing facilities are not working at full capacity. Parts of the body requiring a great deal of energy to function are affected-- the brain, heart, lungs and muscles," said Kilbride. Kirkland requires 24-hour oxygen, and a machine that assists with his breathing. In his short life Kirkland has spent many days in hospital but his mom says over the past year he has been doing really well, and only had to be hospitalized once. Organizers of the event were overwhelmed by the success of it last year and at that time had only set a goal of $5,000. They hope to increase participation and believe its realistic to double what was actually raised last year. Money raised through the Mito March went to The Hospital for Sick Children Metabolism Research Programme. Nearly $27,000 of the funds donated were used by the program to buy a machine-- a BioRad MJ Mini Opticon Real Time System-- that allows researchers to examine cultured cells from patients to determine where there is a gene defect. "We're looking for holes in the information that should be there, but may not be there," said Dr. Brian Robinson, head of the Metabolism Research Programme at The Hospital for Sick Children. He said the funds that came to the program from the Mito March were much welcomed. "Funding for new and innovative projects is never easy to obtain, particularly for mitochondrial diseases, which have almost an orphan status because of their rarity," said Robinson.

It's estimated 10 children born in Ontario each year has mitochondrial disease. He said through the program they hope to do screening of potential drugs to determine if they would have a beneficial effect for a patient. "These kids have almost nothing in the way of treatment," said Robinson. "Progress certainly is being made in terms of finding the gene defect. In terms of finding things that will help, the answer so far is almost a big fat zero." Registration for the Mito March will begin at 8 a.m. with the official start time at 9 a.m. Registration donations and pledges of any amount will be accepted on the day of the event or on-line in advance at http://home.cogeco.ca/~mitomarch/ Tax receipts will be issued by SickKids Foundation for donations of $20 or more. There will also be a post-walk celebration. Organizers are currently looking for prizes, corporate donations and advertisers for the back of the Mito March t-shirts. If interested, call Sue Coulighan, event coordinator, 519-853-4478. For more information on the Mito March call Coulighan at the above number or Kelly Kilbride at 905-873-4737, or e-mail at mitomarch@cogeco.ca.

Georgetown boy Kirkland Kilbride, who suffers from a rare mitochondrial disease, and Dr. Brian Robinson, head of the Metabolism Research Programme at The Hospital for Sick Children, are in the mitochondrial research lab at the Toronto hospital. The white machine in the background was purchased with funds raised in last year's Mito March: Kure for Kirkland, being held this year on May 28.