'When I get to heaven, I won't ask God why': Bucks mom who lost 3 children, husband to ALS
Phil GianficaroALS was killing off Kathleen Malloy Trapenasso’s family one by one.
Her first husband, Patrick Malloy Jr., in 1985. Then, unbelievably, a son, Patrick III; a daughter, AnnaMarie; and another daughter, Kathleen, all in a span of 30 months, beginning in January 2017. A husband and three of their six grown children taken by a progressive neurodegenerative disease for which there is no cure, practically no effective treatment, and woefully lacking research dollars.
ALS is a disease with a heavy driving foot that ignores all stop signs. Medical science works to find an answer. A wife and mother sought one too.
“In the beginning, I would look at the big cross in my bedroom and ask God why?” said Trapenasso, 82, of Levittown. “Why take all three? I just kept looking at the cross and talking to him. Asking him, why?”
Had this woman of faith turned away from God, it would have been understandable. Had she tossed the cross, Bible, religious statues, and prayer cards, who could have blamed her? Three children and a husband killed by the same dreaded disease. The odds are staggering. Her devotion to her Lord was being tested in ways no mother should be left to endure. But instead of moving away, she moved closer.
“He knows what he’s doing, why this is happening to my family,” said Trapenasso. “I don’t. I told him, ‘You must keep me going. You must fill me with your grace every day to deal with this.’ And he has.”
What struck down Trapenasso’s family is Familial ALS, or FALS, meaning there’s an inherited genetic mutation causing the disease.
Patrick Jr. had that mutation. In FALS, there’s 50 percent chance a parent may pass the mutation to each of their children. Only 10 percent of cases are considered familial. Most ALS cases are sporadic, meaning the cause of the disease is unknown.
“You hear the doctor say ALS and your heart just stops,” said Trapenasso. “I remember sitting in the doctor’s office in Lower Bucks with my husband, Patrick, back in 1983. He was having hand shaking, staggering, falling. We thought it was something from when he was in Korea in the war. He was in the 82nd Airborne. Enlisted when he was 19. Strong.
“Then the doctor came in and said these exact words to us: ‘Patrick, I just have to tell you, you have ALS. There’s no treatment. It’s terminal.’ Patrick got quiet. I almost fainted. He died on May 12.”
Mother’s Day.
A woman of faith finds the strength to talk about her misery. She remembers each of her fallen children in detail: Their personalities; their giving nature; and their commitment to raising money and awareness to find a cure for the disease that killed their father and would eventually take each of them.
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“They all grew up in Levittown, graduated from St. Michael the Archangel School, went to Bishop Egan and Bishop Conwell. Patrick worked in Manhattan, lived in Hoboken, N.J. He called me one day to say he didn’t feel well. I thought it was cancer. He said, ‘No, mom, it’s ALS.’ The whole family went to help him. We prepared his meals, did his wash. When he got really sick, he came to live with me. Two years later, in 2017, he died when he was 58. He couldn’t breathe anymore.
“My AnnaMarie started feeling symptoms when she had a hard time breathing. Nobody imagined it’d be ALS too. We put her in St. Mary’s Hospital to be checked out. Dr. (Benjamin) Solomon, a pulmonologist, examined her. He met with us. Told us it was ALS. Again. My heart just left my body. I had no heart anymore. I was in a daze, in another world. She didn’t last long after that. It was in July of ’18, Just 46, with a son and talking marriage.
“Kathleen lived in Newtown. She was a model. One day she told me, ‘Mom, I feel like I’m always falling.’ I told myself no. I didn’t want to believe it was happening again. She kept falling and broke her foot. It healed, but she kept falling. We got her checked out. It was ALS. She died in June of ’19. She was 52. It happened again. Why?”
A husband and three children taken by the same disease.
Somehow, Trapenasso’s faith has provided her with the strength to go on, to love, to be thankful for and cherish her remaining three children, John, Timothy, and Charles; grandchildren; and second husband, Joseph.
“The other kids never got tested for the gene,” she said. “At one point, Charles thought he also had ALS. He got very sick, but thank God it wasn’t ALS. He tested negative for the ALS gene. But my kids carry the burden and fear on their shoulders.”
A mother with more scars on her heart than imaginable watches a cruel, deadly disease ravage her family. She watched, essentially helplessly, as ALS waged war on her family. Watched ALS do what it does, attacks the motor neurons responsible for sending signals from the brain though the spinal cord to control muscle movement. When the neurons die, all voluntary muscle movement stops. Patients incrementally become completely paralyzed, unable to speak, swallow, and, in the end, breathe.
ALS is especially cruel in that it does not impair cognitive thinking.
“One day, AnnaMarie told me, ‘Mom, I feel like I’m trapped inside my own body,’” Trapenasso recalled. “She said, ‘At least if I had Alzheimer’s, I wouldn’t know what’s going on.’
“Imagine, wishing you had Alzheimer’s, which is awful. That just tells you how bad ALS is. We have to find a cure. We have to.”
Trapenasso’s family does their best to help do just that.
They raised thousands of dollars through the efforts of their team, Pat’s Posse, so named in memory of their father and brother who shared the name. They participated in the annual Walk to Defeat ALS at Citizens’ Bank Park. They raised funds and awareness at events at JoJo’s Ice Cream in Fairless Hills and at Old Croydon Café.
“AnnaMarie was our team captain on the walk,” Trapenasso said. “Now, our grandson, Spencer, John’s son, is in charge with his mom, Judy, and his wife, Alley. Friends of ours also walk with us. This year, it’s Oct. 23. We have to find a cure.”
Trapenasso looks to the future, far beyond Sunday, when, as a eucharistic minister, she will assist with the administering of communion at St. Michael’s, and far beyond the ALS walk later this month. She looks to the moment her Lord calls her to the great beyond. When, in his presence, she will not ask why, but give thanks.
“When I get to heaven, I don’t think I’ll ask him why he did this to my family,” she said. “I’ll thank him for giving me the strength to go on. Without it, I don’t think I could have gone on. After what happened to my children, that’s when I needed him most.”
Columnist Phil Gianficaro can be reached at 215-345-3078, pgianficaro@theintell.com, and @philgianficaro on Twitter.