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Apr 15, 2024

Wish Book: Father fixes everything but hospital bed for daughter with muscular dystrophy

A portrait of Alannah Clayton, 14, near her hospital bed in her home in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able

A portrait of Alannah Clayton, 14, near her hospital bed in her home in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

A portrait of the Clayton family, Jacob, 5, left, Debbie, left-center, Alannah, 14, center, Jeff, right-center, and Annalise, 8, right, near Alannah's hospital bed in their home in San Jose, Calif., on Friday, Oct. 25, 2019. Alannah was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

Alannah Clayton's hospital bed is held up by wooded blocks in her families home in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. (Randy Vazquez/Bay Area News Group)

Alannah Clayton, 14, left, smiles with her instructional aid Becky Lefrancois, right, during their class session in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

The Clayton's dog Teddy lays on the families eldest daughter Alannah's hospital bed in the family's home in San Jose, Calif., on Friday, Oct. 25, 2019. Alannah was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

Alannah Clayton, 14, left, smiles with her teacher Cameron Rodriguez, right, during their class session in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

Nurse Tricia Mohammadian, left, checks on Alannah Clayton, 14, right, at her home in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

Alannah Clayton, 14, rides down the street with parents near their home in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

Some of the medical supplies at the Clayton home in San Jose, Calif., on Friday, Oct. 25, 2019. (Randy Vazquez/Bay Area News Group)

Alannah Clayton, 14, right, listens to her teacher Cameron Rodriguez, left, during their class session in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

Alannah Clayton, 14, rides down the street with parents near their home in San Jose, Calif., on Friday, Oct. 25, 2019. Clayton was born with congenital muscular dystrophy and requires a bed that is able to move into pressure relieving postings and tilt. Her current bed is broken and held up by wooden blocks. (Randy Vazquez/Bay Area News Group)

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SAN JOSE — Alannah’s father gerry-rigged an overhead bungee cord to a phone holder so she could text her friends from the hospital bed in their dining room. He added knots to suspend syringes.

He used an electric turkey slicer to carve holes in foam blocks to cushion her feeding tube, and bought rubber clamps at Home Depot to help hold up the harness that keeps her from sliding down in her standing wheelchair.

“I’m a tech guy,” Jeff Clayton said. “I fix things.”

But the one thing he can’t fix for his 14-year-old daughter with congenital muscular dystrophy is her deficient hospital bed — the one they bought refurbished a decade ago from eBay. He’s already replaced the motor once, and while the hydraulic lift is still working, the back of the bed won’t stay up. So he has come up with a work-around — a stack of wooden blocks he shimmies in and out to raise and lower the back of the bed.

“We have to make sure our caregivers are good at Jenga,” he joked, referring to the tower-of-wood balancing game.

A donation to Wishbook can replace the bed with a bigger one that has extra features — including an inflating mattress to discourage bed sores — that will keep her safe and more comfortable. The special bed costs $55,000, and the Claytons were crushed when their insurance company denied their claim to help offset any of the expense.

Jeff is a software engineer. His wife, Debbie, is a registered nurse. And while Alannah is smart and witty and can speak and use her fingers and toes, she can’t walk, crawl or sit on her own. Much of her time is spent in bed.

Her parents are determined to give her a fulfilling life. And thanks to their skills and devotion — along with a cadre of caregivers, friends and family members and an Australian Labradoodle named Teddy — she has survived numerous near-death crises and has found joy.

“I want the best for her and I want her to succeed,” Jeff said. “I always ask myself, am I meeting that?”

When Alannah was born in 2005, she was bright eyed and looked perfect in every way. But she was nearly immobile, only able to wiggle her fingers and toes. The diagnosis of congenital muscular dystrophy was devastating, but this family of faith made a commitment.

“We will do anything for her,” said Debbie, who was a registered nurse at Good Samaritan when Alannah was born.

Alannah’s first four years were in and out of the hospital with colds often turning into pneumonia. Clearing her airways is a daily routine.

“What we have is a mini-ICU at home,” she said. At the ready are a suction machine, nebulizer and “percussion vest,” that all work to keep fluids from building up and settling in.

At the same time, though, “her exposure to the outside world is so limited,” Debbie said.

So her husband turned the backyard of their ranch-style home in San Jose’s greater Cambrian neighborhood into a park. Jeff built a brick path around the circumference, wide enough for a wheelchair. He assembled a gazebo for shade and a playground in the middle for Alannah’s younger siblings, Annalise, 8, and Jacob, 5. There, Alannah acts as a babysitter, refereeing arguments and keeping an eye out to make sure no one gets hurt.

When Jeff and Debbie met in their 20s, Jeff was already acting as a caregiver to his father, who was suffering from diabetes and an amputated leg.

“I thought, this guy has what it takes through thick and thin. That was really impressed upon me, he has the character I want to marry and have kids with,” Debbie said. However, she added, “I didn’t think every generation would be tested the way he has.”

Jeff works fewer days but longer hours at website security company DigiCert to spend more time at home helping Debbie with Alannah and the two younger children who, Debbie says, have “become kind and compassionate people because the world isn’t just about them.”

Donna Bennett, who has been Alannah’s full-time home nurse for 12 years and often tries recipes with her, said “there’s certainly a lot of love in that house. I can tell you that.”

Physical therapist Theresa Williamson comes in weekly to work Alannah’s muscles and, like Jeff, has come up with ideas of her own to help Alannah’s therapy, building a custom brace enabling her sit up, and sewing a soft fleece headband that holds the ventilator mask to Alannah’s face.

The test-runs have had their moments. When Alannah was four, Jeff outfitted an electric wheelchair that she operated with her finger. At first, all she did was spin around until she got dizzy — a thrill for Alannah. “She was like, ‘Whee!’” Jeff said.

When Alannah was eight, Jeff rigged up her first smartphone to “set up an environment of freedom through the devices of today,” he said.

Her first text message came from the backyard, where she was hooked up to a BiPAP ventilator and pulled in a wagon by a friend: “Enjoying outside,” she texted. “Just want you to know I love you.”

After that, he couldn’t automate enough. Allowing Alannah to turn the lights on and off in her room when she felt like it? An Amazon Echo that recognizes Alannah’s soft voice. Prepping recipes she found online? A customized cutting board to fit on the wheelchair tray. Looking down to see what she’s doing, despite little control of her neck? Prism glasses — the kind rock climbers wear — secured with dabs of Play-Doh. Want to feel like you’re somewhere else? A virtual reality headset.

When it comes to her medical care, her mother brings not only her nursing knowledge, but her maternal intuition.

“I think it’s a God-given ability in crisis times,” Debbie said. “When it matters most, I sometimes get these — I don’t know. The answer comes to me.”

Often, it’s clear to Alannah as well.

“Even if she has a breathing tube and can’t talk, she has ways,” Debbie said, “a dry erase board and pointing to it, even lifting her eyebrows — this is what I need. It’s pretty phenomenal.”

Alannah also can be a typical teenager, Donna said, clever and funny and “she throws it right back at you.”

As Alannah puts it, when her parents or nurse got on her nerves, “I gave them and Donna a hard time because I can.” She’s even threatened to move out with a friend, Meghan, in Sacramento.

“She’s been through so much and has endured so much,” Donna said. “She has an inner strength, a warrior spirit.”

It’s a spirit shared by her parents.

“We have the fight and we’re still fighting,” Debbie said. “It’s a crazy race, but I’d rather be running.”

Doctors have told the Claytons that they have taken such good care of Alannah that she is stronger than most patients with her condition. And a recent test shows Alannah is in the 95th percentage when it comes to self esteem — another victory for the Claytons.

Alannah, her mother said, “knows she’s loved.”

THE WISH BOOK SERIESThe Wish Book is an annual series of The Mercury News that invites readers to help their neighbors.

WISHDonations will help Alannah’s family buy her a new hospital bed that can tilt, relieve pressure and keep her cool/dry. Goal: $55,000

HOW TO GIVEDonate at wishbook.mercurynews.com or mail in the coupon.

ONLINE EXTRARead other Wish Book stories, view photos and video at wishbook.mercurynews.com

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