In photo above, Ashley McCormack embarks on "bossing" an Action Trackchair.
Ashley McCormack is a spirited 18-year-old who lives in Darien and has been confined to a wheelchair since she was 10.
When she was little she used to go fishing with her dad on Hamlin Beach along the shores of Lake Ontario. They would also hike trails in Letchworth State Park and go camping.
Life as she knew it and her outdoor adventures were cruelly curtailed by the onslaught of ataxia-telangiectasia syndrome or Louis-Bar syndrome. She was diagnosed with it at age 8 and by 10 she unable to walk on her own.
The progressive neurological disease also makes it hard for her to talk and do a lot of other things. Doctors told her she wouldn't live long, but she's still here, still "wanting to live her life" and enjoy it, too.
Winters are especially difficult because when ice or mud or snow gets on the wheels of her regular motorized wheelchair, it's easy for her to get stuck.
So her mother, Susan Pfalzer, says Ashley's routine is very limited: going from the house to the car -- then to the store or church or the doctor or wherever -- and back again. House-to-car-to-building and back again.
Her little pal, a mixed terrier named "Shyla" often accompanies the self-professed animal lover, who volunteers at two local shelters.
Enter Cheryl Medina, a longtime friend of the family who found out about an amazing -- and expensive -- piece of equipment: the Action Trackchair. To learn more about it, click here.
"Cheryl sent me information about it and it seemed really neat but I didn't think too much about it," Pfalzer said. "But Cheryl is a go-getter and she arranged to have Ashley get a demo of the chair for a day."
The all-terrain wheelchair is highly customizable. Insurance won't cover the cost of it and it retails for more than $11,000. The one that Ashley got to try out goes for $16,300.
The joy Ashley experienced at being able to get around was unreal. She could go visit her Nana down the road, get some fresh air, pay her respects at the family's pet cemetery in the back yard, tool around.
Timid of using it at first, by the day's end she was tackling mounds of snow and showing that Trackchair who was boss.
"Ashley is such a good, sweet girl and she's like any 18-year-old -- she wants to be out and doing things," Medina said. "She's so funny and full of life."
To help her with this noble mobile dream, Medina and Ashley's mother and her Nana, Annette Pfalzer, will hold a benefit at Darien Fire Hall from 1 to 6 p.m. on Sunday, March 31. It is located at 10537 Alleghany Road, Darien Center.
There will be plenty of food and music.
Tickets are $10 presale or $15 at the door.
Organizers, friends and family are seeking cash donations, checks, gift certificates, gift baskets and auction items.
Cash donations and checks can be made out to: Ashley's Action Trackchair. Send them to: Susan Pfalzer, 1792 Sumner Road, Darien, NY 14040.
Group donations are encouraged.
For corporations and organizations, there is an EIN number available for your donations.
For presale tickets, donations or other information about this benefit, call: Cheryl Medina at (716) 863-0388; or (Nana) Annette Pfalzer at 547-9342; or (Mom) Sue Pfalzer at (585) 300-9508.
There is also a GoFundMe account set up. Visit here.
Photos courtesy of Sue Pfalzer.
Ashley and her doggie "Shyla" with her regular motorized wheelchair.