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‘Everybody loves AJ’ — Keystone boy perseveres through heart defect, disabilities
Now 8, AJ Gale is thriving, although his day-to-day life — and the day-to-day life of his family — still looks quite different from it does for others
Nov. 23, 2023 2:20 am, Updated: Nov. 23, 2023 4:26 am
📷 Photos: It Takes A Village - A Photo Essay of AJ’s Story
KEYSTONE — The background image on Aaron Gale’s phone is his favorite photo of his son — with AJ sticking out his tongue and appearing to be winking. You wouldn’t guess it at first glance, but it was taken while AJ — then 11 months old — was having a stroke.
The stroke happened the morning after AJ came home from the hospital for the first time nearly a year after he was born. It was the first time he was alone with his mom, Amber Gale, at his family’s house in Keystone in Benton County. Amber texted Aaron — who was at work — to show him the winking photo to ask his opinion about whether it looked normal. Then she took AJ to the hospital.
A blood clotting disorder, which contributed to AJ’s stroke, is one of the many health conditions he was born with. It’s related to another condition he has called hypoplastic left heart syndrome, which means the left side of his heart is not fully developed and the right side has to work overtime to supply blood to all of his organs. According to the Centers for Disease Control and Prevention, it’s a condition faced by one out of every 3,841 babies born in the United States.
AJ, which is short for Anderson James, also has Down syndrome, which causes delayed development and affects his muscle mass, among other things. That creates additional strain on several parts of his body, including his lungs, throat and stomach. To help with those strains, AJ has a couple of extra holes poked in his body — one for a tracheostomy, or trach, in his throat that helps him breathe, and one for a gastrotomy tube, or g-tube, in his stomach, through which he eats.
AJ was born in 2015 at UnityPoint Health-St. Luke’s Hospital in Cedar Rapids, but he quickly was transferred to the University of Iowa Hospitals and Clinics in Iowa City after his health conditions were discovered.
AJ had his first heart surgery when he was just 15 days old, and he had to fly to Pennsylvania to get it.
The surgery normally is performed within the first five days after a child is born with hypoplastic left heart syndrome. But because of AJ’s other health issues, UI doctors told his parents they wouldn’t perform the surgery because they didn’t believe his quality of life would be high enough, according to Amber. A cardiologist at the UI, however, offered to help the Gales reach out to other hospitals for second opinions.
After being denied by several other hospitals around the country, the couple got the surgery approved by the Children’s Hospital of Philadelphia.
AJ had two heart surgeries before he was 1 year old, and has returned to the Pennsylvania hospital for multiple other treatments and surgeries over the years, including an airway repair surgery in 2020. The airway repair surgery made it possibly for him to breath, a little, without his trach. Now he can run around and play without his parents being concerned about him losing consciousness if his trach gets pulled out — although he’ll likely never be totally free of it.
Now at 8 years old, AJ is thriving, although his day-to-day life — and the day-to-day life of his family — still looks quite different from that of other families.
‘I want to go to the hospital’
At the end of a Nov. 9 speech therapy appointment, AJ took a break from using the verbal communication he’d practiced during the session and chatted with his speech pathologist, Sydney Euchner, using sign language and a computerized speech assistant.
After telling Euchner a joke that’s built into his speech device — “What dog likes to take bubble baths? A shampoodle!” — he looked at his mom and pushed a few buttons to say, “I want to go to the hospital.”
Amber laughed. It’s a favorite phrase of AJ’s, she explained.
“He does that because when he is at the hospital, he gets unrestricted access to watch his iPad all day long. And there’s always a stream of people coming in to talk to and dance with. There’s constant entertainment. He just likes people,” Amber said.
AJ is familiar with the hospital routine, whether he’s going in for a regular checkup or going to the emergency room for an unexpected development. Before he got his airway repair surgery, AJ regularly took ambulance rides to the hospital when his trach would come out or get clogged with mucus and he’d stop breathing. Now, the local EMTs visit him only once or twice a year.
“Our local EMTs got to the point where I’d make coffee when we’d call. They knew the code to the house. They became very friendly. We got to know quite a few of them. We still keep in touch with quite a few of them,” Aaron said.
AJ’s parents have always tried to find fun things to do with him when he’s in the hospital. One of his favorite activities is to have dance parties, where they’ll turn on a spinning, light-up toy, turn off the lights and blast AJ’s favorite music. He has pretty advanced music taste for an 8-year-old: Pitbull, David Guetta, LMFAO, DJs from Mars, or anyone else whose music has a solid beat.
“I did try at one point to put the profane filter on his iPad and the music on there, but that got rid of every remotely good song and now I'm stuck listening to kids songs. I couldn't take it anymore. I’m going to choose my battles, and this is not one,” Amber said.
Aaron said that during a recent hospital visit he told AJ to pull up some “travel tunes” while they were bringing him in his bed from the ER to a hospital room.
“I have to be more specific what kind of tunes because he played ‘WAP’” — with explicit lyrics by rapper Cardi B — “really loud the entire way up. I couldn’t get to him because he was in the bed in front of me. The nurse thought it was hilarious,” Aaron said.
When AJ’s not in the hospital, his parents try to find the right balance of sending him to school where he can improve his social skills, and keeping him home where he’s less likely to catch any cold or flu bugs from the other kids. Often the viruses he catches at school — which can be minor to other students — are the reason he ends up back in the hospital.
This year he started second grade in person, but will move to an at-home schooling plan starting after Thanksgiving. He’ll participate with his elementary school classmates via Zoom a few times a week, and his second grade teacher will visit him at home once a week. He’ll also get regular visits from his special education teacher, his physical therapist, his occupational therapist and his speech pathologist.
After Valentine’s Day, and after the cold and flu season has, hopefully, waned, he’ll go back to school in person for the rest of the year.
‘It’s AJ’s world’
During the COVID-19 pandemic, AJ’s whole family had to be especially careful about isolating themselves for AJ’s sake. Aaron and Amber offered AJ’s sister, Averie, the opportunity to go back to school in person if she wanted to during the 2020-2021 school year, but she decided to stay home.
“She could have gone back to school. Everybody else here (in Keystone) went back to school in person. She was the only one that didn’t,” Amber said. “She just looked at me and said, ‘But if I get sick and then AJ gets sick and he dies, I won’t ever be able to forgive myself. So, I can’t go back right now.’”
Averie, now 14, doesn’t often get her parents’ full attention because of AJ, but she tells them it doesn’t bother her. A lot of her time at home is spent helping with AJ, but as she’s gotten older she has more opportunities to spend time outside the house at various extracurricular activities. She wrestles, does tae kwon do and participates in several choirs and bands.
“When she’s here, it’s very much AJ is the focus. It’s AJ’s world,” Amber said.
They’ve tried to give Averie plenty of opportunities to experience normal activities away from her brother, like going to a summer camp each year, but the reality is that having a family member with disabilities means everyone has to pitch in. Luckily, Averie loves her brother and has always been willing to help out, her parents said.
Aaron and Amber still shoulder the brunt of the responsibility for AJ, though. Even the casual conversations in their home often revolve around him. When most couples might be discussing what groceries they need or what to make for dinner, the Gales are also asking questions like, “When did we last pick up AJ’s oxygen supply?” and “When you’re taking Averie to tae kwon do, can you stop at CVS for AJ’s needles?”
Who gets to drive Averie to her extracurricular activities sometimes comes down to who most needs to get out of the house that day. Amber and Aaron said they take turns taking breaks from AJ’s constant care, but that can mean they hardly ever have time to do things together, or do much for their individual care.
The Gales work with a nursing agency to have nurses who provide care while AJ’s parents are working — Aaron, 45, at the MHC Kenworth dealership in Cedar Rapids and Amber, 42, as a process development manager with Hibu, a marketing company.
Amber works remotely, which means she’s around to watch AJ when the nurses can’t be there. Although the family is approved through Medicaid to have 12 hours a day, seven days a week, of nursing, the staffing for that kind of schedule just isn’t available.
When AJ starts in-home schooling after Thanksgiving, he’ll have two, eight-hour days per week with agency nurses, and three days per week with nurses provided through his school.
'Everybody loves AJ’
A few of the nurses who work with AJ at home used to be school nurses, but started working with the home nursing agency so that they could see AJ more. Amber said that’s because AJ has a knack for making people love him.
It’s a skill that has come in handy when the family has needed financial support throughout their journey. AJ’s care currently is covered under a Medicaid waiver that pays for most of his care in Iowa, and he also has private insurance through his parents that covers some of the medical care he received out-of-state.
But when he was first born, his parents accrued a lot of debt before he was approved for the Medicaid waiver. And even now, the Gales get into a lot of arguments with insurance companies about what prescriptions should be covered. When they lose those fights, they can end up paying thousands of dollars.
Other costs that are related to AJ’s care, but not related directly enough to be covered by insurance, can also stack up pretty quickly. These costs include things like the increased electric bill caused by AJ’s oxygen concentrator constantly being plugged in, the extra batteries needed for the concentrator when the family travels, flights for Amber and Aaron to and from the hospital in Philadelphia when AJ has had to stay for multiple months, a special car seat that is designed to be more accessible in an emergency — even toys that are designed to help with AJ’s development.
“Those little things, they start to add up. And it buries you at times,” Amber said.
One of those times was about a year ago. The Gales had just bought a new vehicle when, suddenly, they were buried by unexpected out-of-pocket expenses when insurance decided not to cover some medications for AJ. They thought about selling a car, or defaulting on a loan, but decided to reach for help to their community.
AJ loves finger painting, so the Gales had the idea to sell some of his artwork. They started putting vinyl lettering down on canvas for him to paint over. After he’s finished and the paint is dried, the vinyl is peeled off to reveal a message surrounded by AJ’s colorful designs.
Community members in Keystone and family members of Aaron’s in the Quad Cities hosted fundraisers where they auctioned off several of AJ’s paintings. The paintings were so popular that people started messaging Amber to request paintings with specific quotes or colors. Commissions took a bit longer to fulfill, however, as it was dependent on when and if AJ wanted to paint.
“We want to make sure that what we are sharing is his joy, and as all my creator friends know, there’s very little joy in being forced to create when you’re not in the mood,” Amber wrote in a blog post.
AJ sold 164 paintings during the fundraisers and earned enough money not only to pay for the financial difficulties the family had, but also to finish paying off the debt from when he was born. His parents said they attribute the generosity to AJ’s innate ability to capture the hearts of others, despite having only half a heart himself.
“Everybody loves AJ — that’s what it really boils down to. He just has this way of trapping people and making them love him,” Amber said.
Comments: (319) 398-8328; emily.andersen@thegazette.com
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