By SARA FURLONG

s.furlong@bradfordera.com

There are times throughout all our lives when we are unable to do one thing or another and, if we’re lucky, our mothers — heroes that they are — step in to do them for us.

Bailey Fabiano of Ridgway was born with ARCI lamellar ichthyosis, a recessive genetic skin disorder that causes dry, scaly and thickened skin.

Those who live with the disorder are susceptible to skin infections and deal with severe skin scaling and heat intolerance — the thick, scaly skin obstructs sweat glands and prevents sweat from reaching the skin surface for cooling.

An 18-mile, one-day, rim-to-rim hike of the Grand Canyon might not be in the cards for Bailey, so her mother, Trade Pretak, will do it for her.

On May 10, to be exact, because May is Ichthyosis Awareness Month.

‘This hike is to raise awareness about the genetic skin disorder my daughter Bailey was bom with,’ Pretak said, ‘and to raise funds for the charity that supports those affected — FIRST.’

The Foundation for Ichthyosis and Related Skin Types, firstskinfoundation. org, administers the grueling test of endurance each year. To participate, individuals must raise a minimum of $3,000 by May 2.

Pretak and Bailey’s friend Lyndsey Weidow of St. Marys will undertake the challenge with a group of nine other hikers and three guides from Rare Earth Adventures.

They will start from the Grand Canyon’s South Rim and begin their descent at 4 a.m. via the South Kaibab Trail. After crossing the Colorado River and having lunch at Phantom Ranch, the hikers will ‘test our personal limits and complete the day by ascending 4,700 feet via Bright Angel Trail. ‘All this effort,’ this year’s group fundraising page at givebutter.com/ iam25 reads, ‘to benefit FIRST Skin Foundation and inspire countless people for Ichthyosis Awareness Month.’

Sweat… page A-8

Bailey Fabiano, Tracie Pretak and Lyndsey Weidow together at a holiday gathering. Pretak and Weidow will hike the Grand Canyon in May to raise funds for and awareness of the rare genetic skin disorder that Bailey was born with.

Photo courtesy of Trade Pretak Pretak said, “This organization taught us everything we know. I had no idea that she couldn’t sweat and she was born in June. If it wasn’t for the organization she probably would have died.

“We’d go for a walk in the hot summer sun and I thought she was falling asleep, but she was in the first stages of heat illness,” she recalled.

To prepare for the upcoming challenge, Pretak and Weidow could choose between marathon-style training with hikes or hill climbs six days a week or high-intensity interval training (HIIT) that, while just as intensive, is a little less time consuming.

Unable to replicate nearly 5,000 feet of elevation gain, Pretak explained she repeats going up and down one steep hill at a brisk pace.

“I have been doing trails in the surrounding area and Cook Forest (State Park) trying to get the elevation that I need to be ready for this, as well as weight training, squats and lunges,” she said. “(Organizers) want to make sure that your legs are strong enough and that your heart can handle the stress.”

The hikers plan to be on their feet for 10 hours. Just as the hikers will carefully select their gear for the ordeal, Pretak emphasized that FIRST representatives do whatever they can to make life easier for those affected with it.

“The physical discomfort and the psychological distress that comes from growing up looking so different than everybody else — it’s very much a challenge,” Pretak said. “(FIRST has) been able to, over the years, get some research doctors excited about trying to find better treatments and hopefully someday a cure.”

Pretak has been an advocate since Bailey was born, with a 1 in 300,000 chance of having the disorder. She, and Bailey, have both served as officers on the FIRST Board of Directors.

“I’ve been a fundraiser for 39 years,” Pretak noted, “but if I could raise a million hiking the Grand Canyon, I would do it. The organization is that critical to families like mine.”

Bailey is doing “fantastic,” Pretak said, married with a 6-month-old baby unaffected by the rare condition.

“She actually has a desire to be a motivational speaker, share her story of overcoming insecurity and becoming confident,” Pretak shared. “She knows that can resonate with everyone, because every single person has something about themselves that they don’t like.”

To learn more or donate, visit givebutter. com/iam25 and firstskinfoundation.org.