SCOTTSDALE, AZ -- When Ryan Cottor was eight months old, his parents learned he wasn’t just a late bloomer when it comes to motor skills.

 

Ryan wasn’t doing things like pushing himself up or sitting unassisted but that’s because Ryan was diagnosed with a life limiting disease called spinal muscular atrophy.

 

“It’s a neurological disease that really, in layman’s terms, means he has no strength,” Ryan’s father Jonathan said. “He was a floppy baby.”

 

There are no treatments or cures, and Jonathan and his wife were told not to expect to celebrate Ryan’s second birthday.

 

It was a tough thing to hear and to make things worse, the family was living in London at the time, an 11-hour flight to their closest family members in the Phoenix area.

 

“We just had to kind of start to live life,” Jonathan said. “That put us on a pathway to lots of specialists, lots of physical therapy, lots of sleepless nights because in those early years the condition caused him to have lots of pneumonias, have trouble breathing, we found ourselves in the emergency room a lot. And we had a lot of sleepless nights because we had a lot of what’s called anticipatory grief because he wasn’t expected to live very long so how do we find joy and give him hope?”

 

So the family was referred to a place called Helen House, the world’s first palliative care/respite home for children.

 

At first Jonathan and his wife Holly couldn’t do it; hospice meant death to them and they just couldn’t give up yet — but as things progressed and medical staff kept referring them to Helen House, they eventually went.

“When we walked in the door it was like a warm blanket, a true haven,” Jonathan said. “It was a home away from home ... really to provide us with overnight respite. It was just a place where they would care for our son so my wife and I could go home and get a break, get some sleep for a couple of nights.”

 

It turns out there are about 54 children’s hospice facilities across the United Kingdom, but when Jonathan’s job brought the family back to Scottsdale in 2003, there were no such facilities in the United States.

 

So Jonathan and his wife went to work and created one in Phoenix called Ryan House on land St. Joseph’s Hospital leased to them for $1 year for 60 years.

 

Over 550 children have died at Ryan house since it opened. It’s a grim statistic but one Jonathan is proud of because Ryan House offers a warm, loving environment for when that time comes.

 

That time was further out than Jonathan and Holly had planned. It turns out

Ryan celebrated his second birthday and went on to see his’ 17th birthday before he passed — at Ryan House.

 

Of course that hit Jonathan hard, so he threw himself into helping create more children’s respite homes across the country.

 

“I decided if I was really going to make a difference, I was really going to go after this from a federal level, a national level,” Jonathan said. “Ryan House is fantastic, it is truly a jewel in our community, but there are other communities across the country trying to do this.”

 

A marketing professional by trade, Jonathan quit his job and earned a master’s degree in public health from Johns Hopkins University and he founded Children’s Respite Homes of America to help people across the country create children’s hospice homes.

 

“Like that Helen House model, that UK model that we brought to Phoenix, let’s bring that simple model to more communities,” Jonathan said. “Let’s have other pioneers really start these things because it’s a hard project to start. We need to change laws. We need to really reframe the U.S. health care system for kids, which means we need to go in and change legislation, we need to change regulations and so, that’s what I did.”

 

Today there are seven children’s palliative care/respite homes across the United States, but Jonathan is working to grow that number.

 

“Today I have 40 pioneers and programs across 27 states that are all trying to pursue this kind of mission and care model in their own communities,” Jonathan said.

 

Melissa Keller is one of those pioneers Jonathan is working with. She and her team are working to create a children’s respite in Austin, Texas.

Melissa had a medically fragile child with “nine pages of diagnoses” named

Abigail who averaged about 100 days a year in the hospital but passed away at the age of 11 in 2019.

 

After that Melissa started looking into children’s respite and found very little until she came across Ryan House.

 

“I had two feelings, elation and sadness at the same time,” Melissa said. “I was elated to hear those types of services did exist. I was saddened to know they didn’t exist everywhere.”

 

So she and her team began the process of creating a respite home in their community.

 

They are early in the process of getting a center up and running. They have launched a fundraising campaign and are actively looking for raw property or a home they can convert and are optimistically hoping to open their doors by the end of 2027 or sometime in 2028.

 

In the meantime, the Abigail E. Keller Foundation has provided more than $400,000 in grants and direct support to 165 families in Central Texas, according to the foundation’s website.

 

Shanna Sieck is another pioneer working with Jonathan to get a children’s respite home built in Iowa City, Iowa.

 

Her son Mason was born in 2014 but was diagnosed with “Gardner’s Syndrome” with Desmoid tumors — which is to say he had colon cancer and was at high risk for contracting other forms of cancer. Most people with the disease develop a couple of tumors but Mason had 40, which caused him extreme pain.

 

Mason’s family tried putting him in adult hospice, but it just didn’t work.

His doctors then told Shanna about a children’s residential respite center in Minneapolis called Crescent Cove.

 

It was wonderful but like his doctors’ offices, it was five hours away.

So about six months after Mason passed, Crescent Cove staff put Shanna in touch with Jonathan and she started the process of creating a children’s respite facility in Iowa City.

 

Shanna’s group has a signed purchase agreement on some land and are working on licensesure and fund raising.

 

She too hopes to be open in either 2027 or 2028.

 

She feels the need for more children’s hospice facilities has been overlooked because people just don’t want to deal with grim realities — kids aren’t supposed to die — but there are some out there who unfortunately have to face the fact that sometimes they do.

 

“When you’re forced to think about it and you don’t have a choice, you’re out there searching for what’s gonna work for you because things are not working at home, it really opens your eyes to see exactly what the need is,” Shanna said.

 

For more information, visit https://childrensrespitehomes.org/.

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