Family must move for daughter’s heart transplant

PALMER — Parents know well the changes that come with having a child. Children alter even things you didn’t know could change in your life.

Understanding that is a step toward understanding the lives Garey Robinson and his wife, Beckey Miller-Robinson are leading.

“It changes your life a lot having a kid, but especially a sick kid,” Miller-Robinson said. “Your whole life becomes about your child’s condition really. You have to really isolate them from anybody who might be sick.”

The Robinsons’ child, Kennedy Mae, 3, was born with Hypoplastic Left Heart Syndrome, something they found out when Miller-Robinson was still pregnant.

“To put it simply, she would be born with half of a heart; since the left side of the heart is responsible for pumping blood to the body and brain our baby would not survive outside of Beckey for more than a week roughly, without a series of three open heart surgeries,” Robinson wrote in an essay on caringbridge.com, a site dedicated to helping family and friends learn about and keep in touch with people needing medical treatment.

Kennedy Mae underwent those three surgeries and no longer has to live in a hospital. There are pictures on Caring Bridge and on Facebook of her doing a lot of the things little girls do.

“She likes anything to do with princesses and fairies and she likes to play. She likes to dress up as a princess. She has a lot of little dresses that she wears and she has several TV shows that are her favorites,” Robinson said.

The Robinsons are all Alaskans, born and raised. But, soon, they’ll have to leave the state soon, they learned on their last visit with doctors in California.

“This last time we went down we found out that we were approved for transplant,” Robinson said.

But being on that transplant list will necessitate moving nearer the hospital so that when a heart becomes available, Kennedy will be nearby, ready to receive it.

“We have to live within a three-hour drive of the hospital which is in Palo Alto,” Robinson said.

Miller-Robinson is going to school to earn a nursing degree. Robinson is a former police officer and former Mat-Su Borough medic who works as a tech in the Emergency Room at Mat-Su Regional Medical Center. Moving expenses are out of their reach financially so friends have set up an account for them at gofundme.com/KennedyMae and people who want to help the Robinsons can still donate there.

“I don’t know how we would even be able to move without the community’s support,” Miller-Robinson said, adding that she wanted to give “a huge big thanks to everyone who has helped us out. We wouldn’t be able to do it without everybody.”

She said she was also grateful to Kennedy Mae’s medical team, including doctors in California and in Alaska.

“They’ve made it possible for us to stay home as long as possible,” she said.

She said she hopes that the family will be able to move back to Alaska sooner rather than later but it could take years.

Getting a diagnosis like the Robinsons did when their child was still in utero was immensely painful.

“Even though Kennedy’s life isn’t what you would consider to be quote unquote ‘normal’ as compared to other kids she has a really amazing quality of life,” Miller-Robinson said. “We were told by a lot of doctors that she would not have a good quality of life and it’s just not true.”

She said she hopes that by telling Kennedy’s story she might inspire people to have conversations about organ donation.

“It’s a really tough thing to have somebody come to you and say, ‘do you want to donate your child’s organs?’ when you’ve just learned you’re going to lose your baby. So I understand why they would make that decision,” she said. “I hope that by having a story out there about a kid like Kennedy people will start thinking about that.”

Contact Andrew Wellner at 352-2270 or andrew.wellner@frontiersman.com.