Nonprofit Trish's Angels strives to help ALS patients
Published: Dec. 26, 2013 Updated: 10:11 a.m. by Kelley Mejdrich Orange County Register
The kids were home from school, and 38-year-old Kelley Patterson sat in her tan armchair in the living room, her Shih Tzu, Rubi, on her lap when the phone rang.
Thirteen-year-old Riley tapped her mom's cellphone to answer and placed it on Kelley's ear. The carpet guys noticed they missed something on the bill. MacKenzie, 14, wrote down a website link, details the family might need later, from her mom's conversation.
The smell of rice being browned in oil wafted into the living room: a sign Cynthia Torres, the paid caregiver, was almost done with cooking dinner. Torres had just given Kelley a bath.
The Patterson family carries an energy you can feel, right down to their dog Rubi. Avid campers, nothing can stop them from spending time together, even Kelley's diagnosis of amyotrophic lateral sclerosis.
ALS is a fatal disease that attacks the body's motor neurons, leading to muscle weakening and paralysis. Camping at San Clemente State Beach, watching the holiday parade, you name it – Kelley is there with her two daughters and husband, Mark.
“If anything it's a blessing to me that it's me and not my kids going through this,” Kelley said. “I can't imagine not getting up every day and keep going. I mean, what does that teach them?”
But the family slowed down when it came to paying for the care giving that Kelley needs. Mark, Kelley's husband of 15 years, said they'd been trying for months to find someone to help bathe Kelley, until Trish's Angels came along.
The nonprofit, started in October by Laguna Niguel resident Jack Hoyt, is named Trish's Angels in honor of his wife, who died of the same disease.
Trish's Angels was created to “financially support patients diagnosed with ALS so they can live fuller lives,” its website reads. In addition to Kelley, the nonprofit is helping another patient pay for medication, with four other applications in process, Hoyt said.
A 24-HOUR JOB
Torres is “an angel, she is a blessing,” Mark said, as he sat on the couch across from his wife after a long day driving a cement truck for Spragues Ready Mix in Irwindale.
“She's part of our family now,” Mark said. “I wish I could afford more time.”
Before Torres arrived midafternoon, the family had been working all day to care for Kelley, in addition to school and work.
Each morning, Mark and his daughter Riley wake up around 3:30 a.m. to help Kelley to the bathroom. They dress Kelley, brush her teeth and set her in her chair in the living room. Mark goes to work, and Kelley's father, David Munke, stays with her all day.
“I wish I could stay with her every day, but I just can't,” Mark said.
Kelley was diagnosed with ALS on Aug. 16, 2011, the couple's “I love you” anniversary. Today, Kelley relies on a machine to push more oxygen into her lungs through her nose, because her diaphragm muscles have weakened.
Kelley explained she has a sense of touch, but is paralyzed from the neck down. But at least she's not in pain, she said.
“Sitting here right now, I do not feel sick. I feel like if I wanted to I could get up and walk out of my chair. But I can't,” Kelley said. “I don't feel like there's anything stopping me until I go and try to move.”
In addition to national nonprofits providing medical care and support groups like the Muscular Dystrophy Association and the ALS Association, the Pattersons also benefit from extended family.
Kelley's sister-in-law goes along with Mark to doctor appointments every month. Mark's aunt brings the family dinner every Monday. Their friends and family trade off bringing them food through takethemameal.com or send gift cards in the mail. Munke, who lost his job in July 2011, watches over his daughter every day when no one else can.
Kelley said she gets upset over the work she is for her family. It's why she's so grateful for Trish's Angels.
Jack Hoyt said Kelley's bravery and energy reminds him of his wife.
By the time Trish Hoyt was diagnosed in April 2011, she had lost the use of her hands, Jack Hoyt said. A lifelong lover of exercise, Trish Hoyt continued to swim and take daily walks against the advice of her doctor. She was a registered nurse.
“She knew what she was getting into,” Jack Hoyt said.
Trish Hoyt's symptoms began in December 2010, when she had trouble turning the ignition in her car.
After her diagnosis, things progressed rapidly.
Hoyt soon had to be put on a ventilator, which was difficult because she lost her ability to communicate, Jack Hoyt said. But the machine, and the expensive, complicated care that went along with it, preserved her life and allowed her to see the birth of her grandchild and the wedding of her daughter Kelly Toth.
Hoyt cared for his wife by himself for almost a year. Eventually, he hired a team of seven caregivers who provided her round-the-clock care. In the last year of her life, it cost him more than $90,000.
After his wife died in November 2012, Hoyt became acutely aware others grappling with the disease weren't as fortunate.
Trish's Angels is based in Aliso Viejo – that's where Hoyt's office is. But he often works from home since he started working to form the nonprofit in January.
Using his own money to run the administrative side, Hoyt said all money donated will go to caregiving services – so far, he's raised more than $25,000. He's started a website, trishsangelsals.org
Now, Hoyt said, he's only limited by the amount of donations.
Toth, Hoyt's daughter, thinks the nonprofit is a great way to keep her mother's spirit alive.
“This really is such a great way to honor her and who she was,” Toth said.
LIVING WITH ALS
Quality of life is key for Kelley Patterson, who said the hardest thing for her is to see people get angry, instead of accept what's happening to them.
“I just wish I could say, ‘Just let it go,'” Kelley said of people with ALS who refuse to accept help eating or stop walking. “It's more important to enjoy the time you have than to fight everything you're losing.”
Reflecting on how others react to her, Kelley said she's noticed she “attracts the weirdos.”
People always want to tell her their stories, and she gets tired of the blank stares. Kids are better, because they just ask what's going on. But no matter the situation, it's “just amazing” when someone wants to pray with her, even in the grocery of Target.
Kelley said that she's already passed a kind of “mental date” she had in her head of how long she would survive her diagnosis. Her doctors gave her four to six months.
That was more than two years ago.
She worries for her family.
“I'm kind of afraid; I don't want to go on forever like this because I do feel that it is a lot, it's a big burden on my family,” Kelley said. “But I'm not ready to give up yet.”
This summer, the Pattersons are looking forward to their reservations at San Clemente State Beach, where they go every year.
“Don't let the disease control your lifestyle,” Mark said.
“I don't feel like I'm dying,” Kelley said. “I think it's important that people know even though you're sick, you can continue living.”
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