Alpha Stories

Published on Monday, March 3, 2014

Connecticut Alpha ‘will be carrying the Alpha Angels’ on Appalachian Trail hike

Connecticut Alpha ‘will be carrying the Alpha Angels’ on Appalachian Trail hike

On Feb. 27, Jonathan Maidment took the first step in a 2,200-mile journey.

Jonathan, 18, plans to hike the full Appalachian Trail, starting at Springer Mountain, GA, and ending at Mount Katahdin, ME. He’ll be carrying a flag that says, “Hiking For A Cure — Remembering Our Alpha Angels.”

He’s walking for his maternal grandmother, Alyce McArdle, who died of Alpha-1 in 2006, her good friend Ed Brailey, and for all the Alphas who have died. But he’s also walking for the living, and hopes to raise $10,000 for research to find a cure.

Jonathan himself is an Alpha, diagnosed at age 10. So is his father, Dave. His mother, Karen, is an MZ, a carrier.

“We have been in a whirlwind,” Karen Maidment says of preparations for the adventure these past months at their home in Bolton, CT.  They are a family of hikers and skiers — Jonathan and his dad were headed out to Vermont for one last trip down the slopes just a week before the hike, to Karen’s chagrin.

“I told him, ‘you better not break a leg!’ ” she says, laughing. About the hike, she admits to being a little nervous. “I’m excited, but there’s the mother in me — he hasn’t gotten that first cold this year, you know.”

Jonathan will be armed with inhalers and prescriptions from his doctor, just in case. He’ll be walking with his longtime friend, Brian Fearon. The two are Eagle Scouts; at age 15, they hiked the Appalachian Trail for a week in New Hampshire, and have a photo of themselves there.

“I asked them to take another photo of themselves at the exact same point when they get there,” Karen Maidment says.

“This has been a dream of ours for years, and before we head off for college, we decided to turn our dream into a reality,” Jonathan wrote in a newsletter about the trip. At the end, he wrote, “Together, let’s defeat Alpha-1 Antitrypsin Deficiency.”

Jonathan was close to his grandmother, and spoke at her funeral in 2006. Karen Maidment says her mother, diagnosed in the mid-1980s, was among the first Alphas to receive Prolastin, the first FDA-approved augmentation therapy.

“She did all her own research,” Karen Maidment says. Alyce McArdle, one of 14 children in a family of Swedish descent, had two siblings who died as infants, both with liver disease. Another sibling died at age 37 with lung disease. Karen and her mom got involved in the Alpha-1 community through the Connecticut support group.

“At the time of her death, I had already been tested,” Karen Maidment says. “When she passed away, I told the doctor to add an Alpha-1 test during Jonathan’s regular check-up.”

His parents waited a few months after McArdle’s death to tell Jonathan he had Alpha-1. “We didn’t want him to consider it a death sentence,” Karen Maidment says. “We tried to educate him as much as possible — his grandma had been a smoker — and to find doctors who could help him. That was the biggest challenge.”

Jonathan’s pediatrician said he was their first Alpha-1 patient. Later, Karen Maidment says, they “hit a home run” with the lung and liver specialists they found.

Jonathan expects the hike to take about six months, although it might take longer since there’s been so much snow this winter. He’ll have his 19th birthday March 10, on the trail.

“Steve Petty, of the Connecticut support group, said he wants him to do a presentation in September, so he has to be back by then!” Karen Maidment says.

On the flag Jonathan is taking, they have hand-written the names of Alphas who died. He’ll take a photo with it in each of the 14 states he’s passing through.

“He will be carrying the Alpha Angels throughout his journey,” his mother says.

Donate here to help Jonathan reach his goal of $10,000.

His phone reception will be spotty in the mountains, but Jonathan will be posting updates on his progress as often as possible on his Facebook page, hiking4acureHere is a map of the full Appalachian Trail. Read more about it here and here.

Read a story about Jonathan’s journey in the Hartford Courant.