Megan Ryan and Zach Hollenbeck know their baby is dying.

Their son, Kashtyn, has a gene mutation that affects copper levels in the body called Menkes Disease. Doctors said he likely wouldn’t live to see 18 months. That milestone was reached on March 18, 2023. And Kashtyn is still here.

As a newborn, Kashtyn seemed healthy. He was chunky and smiley with puffy little arms that creased into his hands.

But, as the disease has continued to tear through his body, Kashtyn has changed. His arms and legs now lack muscle. He can’t keep his head up. It’s hard to tell if he’s breathing or not as he sleeps until he exhales a quiet, faint snore.

At 18-months-old, Kashtyn is at roughly the same development as a 2-month-old.

“I haven’t lost my child yet,” Ryan said. “But I’ve been grieving the loss of my child for a long time.”

Despite the diagnosis, Kashtyn is still fighting. He still has his bright blue eyes and a powerful grip with tiny fingers. He’s 32 inches tall with a gummy smile and tufts of wispy hair.

He’s quieter now and Ryan often spends her days holding him with Disney Junior on in the background between rounds of physical therapy. She said his warm personality and resilience gives her hope, even when he gives her toddler sass.

“He sees you… He’s got a soul,” Ryan said. “He’s just my little sidekick.”

A Central Oregon life

Megan Ryan was born a few hundred feet from where she now lives, deep in the High Desert west of Redmond. She’s lived in her studio home with Hollenbeck for two years, next door to her dad and brother.

She attended Central Christian for 10 years, then graduated from Redmond High School. She studied cosmetology at Bend Phagans, following in the footsteps of five generations of beauticians in the family. She now works at the Feathered Salon in downtown Redmond.

“I fell in love with it,” Ryan said. “And then I got pregnant with Kashtyn.”

Aside from a tumor in Ryan that caused pain that doctors removed with no complications, Ryan said her pregnancy was fine. Despite a planned C-section, Kashtyn came naturally a few weeks early on Sept. 18, 2021.

Ryan remembers watching Kashtyn, newborn and chubby, laughing as his cousin made faces. According to Ryan, he moved around like any normal newborn.

Kashtyn began going to therapy for tight muscles, common in many newborns, but doctors thought he was fine. Every baby is different and some take a little longer to develop and grow.

But, as time passed he still wasn’t growing at the same pace as other babies. Kashtyn couldn’t lift his head at their six-month check-up and had no muscle tone.

“I knew something was wrong,” she said. “I just didn’t know what it was.”

On their first mother’s day weekend, when Kashtyn was roughly six months old, he stopped breathing, turned blue and had multiple seizures.

The family flew to Randall Children’s Hospital in Portland and discovered he had pneumonia.

His parents learned of his diagnosis a month and a half later as they were leaving to go to Portland for another doctor’s visit. Halfway down the driveway, the genetic counselor called to tell them the diagnosis was Menkes. They said there is no cure and the disease has a 100 percent mortality rate

According to the National Library of Health, Menkes is estimated to affect one in 100,000 newborns. In about one-third of cases, there is no family history of the disorder. That’s the case for Kashtyn.

“It was definitely just a freak, fluke thing,” Ryan said.

According to Ryan, doctors look for some 300 diseases, disorders and genetic problems during pregnancy and after birth. Menkes is not one of them. Ryan’s next goal is to add Menkes to the battery of tests given to newborns.

According to the National Institute of Health, Menkes Disease is caused by a gene mutation that regulates the metabolism of copper in the body. Infants may appear healthy at birth and for six to eight weeks after.

Eventually, brain gray matter degenerates and arteries in the brain may become twisted and frayed. The disease is characterized by unstable body temperature, seizures, stunted growth, loose skin and brittle hair.

If started within 28 days of birth, copper injections can help prevent symptoms, but there is no known long-term cure. There are experimental treatments, but none approved by the FDA.

“It’s weird watching the decline,” Ryan said.

Anticipatory grief

Each day is more difficult than the last. Whether it’s dealing with seizures or his inability to go to the bathroom because he lacks the muscles to do so.

Ryan and Hollenbeck face some uncomfortable moments, but they’re finding little things that can make Kashtyn and themselves more comfortable.

Ryan said everyone deals with trauma and pain differently. For her, that means talking about it. For Hollenbeck — who is a major part of Ryan and Kashtyn’s life — it is the opposite.

Kindra Wey, Kashtyn’s hospice nurse, has been taking care of Kashtyn for eight months with Partners in Care. Ryan said that despite little research on the disease, their doctors, therapists and nurses have been instrumental in making Kashtyn’s life as comfortable as possible in the short time they’ll have him.

She’s found a community in Kashtyn’s care team.

“That’s the thing. This is a learning process,” Ryan said. “We’re a team. We’re going through this together. Kash is teaching us.”

Wey said it’s helpful to believe death isn’t the end. She tells her families that it’s only sad for the families, not sad for the one that’s dying. According to Wey, hospice care makes you reframe and think about your inner dialogue with death and dying.

Wey said to not think about it as caring for a child that’s dying but to think about it as just caring for a child.

“My job is to help people live — not die,” Wey said.

Ryan recognized that eventually she will have to say goodbye to Kashtyn.

Rather than making Kashtyn suffer just to extend his life for a few more months, they decided to instead focus on making his short life as happy and comfortable as possible.

“I would rather have him so happy while I have him than be miserable,” she said. “His little body already has so much trauma.”

Silver linings

Despite the pain of watching Kashtyn’s decline, Ryan is working to accept reality.

“I don’t know what it’s going to be like when I lose him,” Ryan said. “I don’t know how I’m going to react.”

But, she said she might be able to help the next mother who faces a child’s diagnosis of Menkes Disease and is paving the way for awareness and future conversations. Ryan intends to advocate for him after he passes and do things in his name.

“That is what makes me okay,” Ryan said. “Kashtyn is here to teach a lot of people.”

Wey noted that she never learned about Menkes Disease in nursing school, but recently explained it to some 60 students at Central Oregon Community College.

The Redmond High School Sparrow Club is also jumping in to help spread the word.

Made up of 25 to 30 students, the club selected Kashtyn as their “sparrow” for the school year and has been working to raise funds for Ryan and Hollenbeck.

Already, they’ve raised over $20,000.

Nathan Saito, a health and physical education teacher at RHS and the club’s advisor, said he’d never heard about Menkes Disease before Kashtyn came along but said it has been powerful to watch the students jump in to help.

Saito, who was one of Ryan’s teachers when she went to RHS, said it made him proud to see the community come together for Kashtyn and get the word out about the disease.

“I can just change something. It’s empowering,” Ryan said. “Something really crappy is going to make something really good.”