Bailey McCarthy (left) and her brother, Keenan, are the two youngest of four McCarthy children to attend St. Mary Our Mother School. Their father, Brendan, died of ALS in 2015. (Courier photo by Jeff Witherow)
HORSEHEADS — One by one, Keenan McCarthy’s sixth-grade classmates bid him a heartfelt farewell on June 23 as they wrapped up their final day at St. Mary Our Mother School.
Such poignant gestures are common when the McCarthys are involved, thanks to a special bond between school and family that was born out of a tragic circumstance.
In June 2015, Brendan McCarthy died at the age of 39 after a two-year struggle with amyotrophic lateral sclerosis. The degenerative muscle disease, for which there is no known cure, is also known as ALS or Lou Gehrig’s disease.
Keenan and his sisters Bailey, Kaelyn and Kiersten were between 1 and 7 years old when their father was diagnosed. From the early stages of their father’s illness, the St. Mary Our Mother community provided constant support to the children and their mother, Killeen, as the children progressed from pre-kindergarten through 6th grade.
“They’re a wonderful family,” said Heather Bill, second-grade principal at St. Mary Our Mother, who also taught at the school for 12 years. “All staff and parents rallied around them, always making sure their needs were met at school and at home. We love them and continue to make sure they are well.
Brendan McCarthy was a beloved special education teacher at Horseheads High School and an avid athlete and swim coach, well known in the Chemung County area for his infectious enthusiasm. But he gradually lost the ability to use his muscles, becoming unable to walk or talk and depending on his family for such basic needs as dressing and getting around.
“You really can’t move. He had to be in a wheelchair and had a joystick to move forward (to control the wheelchair),” Keenan said, adding that his father communicated through a talking iPad app.
Like the person who gave his name to amyotrophic lateral sclerosis, Brendan McCarthy began his battle with the disease before he turned 40. Lou Gehrig, a New York Yankees baseball star, played 2,130 consecutive games in 14 years – then a major league record. But even the man nicknamed “The Iron Horse” was vulnerable to ALS. The advance of Gehrig’s disease forced the end of his streak in 1939, and he died in 1941, just before his 38th birthday.
As her husband’s ALS escalated, so did the level of kindness at St. Mary Our Mother School, Killeen McCarthy recalls. She noted that a group of families had arranged to prepare daily meals for her children; children simply handed in their lunch boxes at the end of the school day, and the boxes were filled and returned the next morning.
“Everyone got together and offered food, cooking for us. It really helped,” Keenan said.
“It was amazing — just those little things you don’t think about,” Killeen remarked, noting that each child was also matched with a support person at St. Mary Our Mother whenever they were experiencing emotional difficulties.
“It wasn’t a school, it was a family, I guess that’s the best way to put it,” added Killeen, whose family is from St. Mary Our Mother Parish.
To this day, the school — where Bailey, now starting fifth grade, is the newest sibling enrolled — remains a special place for the McCarthys.
“I love it here,” she said.
‘Do not give up’
Keenan is now starting seventh grade at Horseheads Middle School. Kaelyn and Kiersten are in ninth and eleventh grade respectively at Horseheads High School, where their mother is a math teacher.
Their father’s legacy remains important in the schools and the wider community. For example, t-shirts with the words “Lover-Fighter” honoring Brendan McCarthy remain popular, according to his wife.
“They are still everywhere. I always place orders for them for people,” Killeen said, explaining that the last part of “Lover-Fighter” refers to how her husband chose to approach his ALS diagnosis.
Keenan, meanwhile, said the expression helps him deal with difficulties in his own life.
“It means being a strong fighter, working through things – don’t give up,” said Keenan, who received a Triple-C (commitment, character, courage) award from St. Mary Our Mother School at the end of the 2021 -22 school year.
Surrounded by love
Killeen McCarthy said all of her children have responded admirably to the challenge of living without their father. Although they had to grow quickly, she says, “they are very resilient. They’re all ready to help, all responsible, all attentive to the things kids shouldn’t have to worry about.
“We all help. If my mom can’t drive (me somewhere) I try to take a ride with my friends,” Keenan said.
“We help each other with homework and stuff like that,” Bailey added.
Killeen said she is doing reasonably well as a single mother of four and, on a personal level, takes comfort in her involvement with a growing network of community members who have lost a loved one prematurely. Community ties also continue to improve the well-being of her children, she noted.
“They are all doing well academically, socially and athletically. They are surrounded by love,” she remarked.
Killeen said her husband’s love and spirit continues to guide their children as well, adding that she knows Brendan is as proud of them as she is.
“Without a doubt. I fully believe it and I feel it,” she said.
Key words: Health