YELLOWKNIFE - It's hard to imagine a parent who wouldn't see their child as anything but beautiful. Tim Mercer and Debbie Meade are no exception.

Nine months ago, Meade gave birth to the couple's second child Shannon. The little girl is an otherwise happy, bubbly baby like any other newborn.

Tim Mercer and Debbie Meade are working to raise awareness about their daughter Shannon Mercer's skin condition. The couple is hosting a ski relay to raise money for the Nevus Outreach Foundation, which is working towards finding a cure for the potentially fatal condition. - Christine Grimard/NNSL photo

One thing that sets her apart from other babies: She was born with large congenital melanocytic nevi - a rare skin disorder affecting one in 20,000 infants.

Shannon has a mole covering more than half of her face. In some cases, children are born with this affliction that bears a birthmark covering 85 per cent of their bodies.

The condition affects more than aesthetics, as people with large birthmarks are at an increased risk of developing malignant melanoma, the deadliest form of skin cancer.

"You know as a parent you just have to deal with it," said Meade.

Since Shannon's birth, the couple has coped by trying to learn more about the disease.

In their Internet research, they came across an organization, Nevus Outreach, which aims to inform people about nevus, the medical name for a birthmark.

The organization brings together families facing the same trials.

"It was a godsend to us," said Mercer.

"Meeting people going through just what we were."

Through their research and participation with Nevus Outreach, Mercer and Meade gained some knowledge of what they can expect over the next few years.

Because of the heightened risk of skin cancer, the birthmark will have to be removed entirely, leaving behind scars that will last a lifetime.

In their research, they found just one doctor in Canada who succeeded at removing an entire birthmark, Dr. Ronald Zuker, at the Hospital for Sick Kids in Toronto.

Shannon will fly to Toronto periodically over the next several years for surgery. To cover the mark, doctors will use Shannon's own skin to graph over the area.

To get that skin, she will need an expander inserted into her neck.

An expander is a device filled with steady injections of saline over a three to four month period, which produces a bulbous growth in her neck to create the extra skin necessary for a skin graph.

To raise awareness about Shannon's condition, Mercer and Meade are holding what they expect to be an annual event, the first Nevus Ski Relay coming up March 3.

"It's a small community and we want people to know what it is," said Tim.

"It isn't anything we're ashamed of. We think if people understand what it is, it'll be easier to understand."

"We just wanted an event to get people out," said Mercer.

In addition to the relay, the couple will show a video and give out information on nevus.

Expenses for Shannon's treatment will be covered entirely by the government of the NWT.

Proceeds from the event's $10 registration fee will go partly to the Stanton Territorial Hospital Foundation, and also to Nevus Outreach.

Nevus Outreach works not only to educate the public on nevus and provide support to families, but also funds research towards treatment or a cure for Shannon's condition.

The relay will take place at the Yellowknife Ski Club. Teams of one to four skiers can register at Overlander Sports.

The event begins at 1:30 p.m. and finishes with a wrap-up party at 8:30 p.m. in the evening.