Each Friday, Declan Mitchell goes to Riley’s Children’s Hospital in Indianapolis.
If you went there looking for him, he would be the one dressed head-to-toe in sports attire, as he always is: jersey, socks, the whole works. Sometimes it’s Michigan gear. Sometimes it’s a LeBron James day. Sometimes it’s the Indiana Pacers.
Declan’s mother, Sarah, says he likes to show off his uniform to the nurses.
And then Declan, just 11 years old, sits in a chair for four hours and gets a blood infusion. Once a week. Every week.
Declan has Hunter Syndrome. It’s a rare, genetic disease that only affects males, and it means that he is missing a particular enzyme that is crucial to cellular repair. Fewer than 500 boys in the country are affected by the condition.
Hunter Syndrome is degenerative, and there is no cure. Declan can still walk and run and climb stairs, but eventually, that will change. He is cognitively impaired — Sarah estimates he has the intellectual ability of a three-year-old — so his speaking ability is limited, though he is able to communicate what he wants or needs. That, too, will cease eventually.
The life expectancy for Hunter Syndrome used to be just 15 years. Thanks to these blood infusions, which replace the enzyme Declan is missing, that number could be doubled.
“Honestly, he really loves going (to the hospital) so much, because it’s a part of his life,” Sarah told me over the phone two weeks ago. “He doesn’t think anything different, and on Fridays, we go there.”
So every Friday, Declan sits. He eats snacks and watches movies to pass the time. He loves Michigan football, since his grandma graduated from the University and his mom attended for a year, so his favorite thing to watch is a Michigan football DVD.
“We actually have to keep replacing (it). Thank God it’s on Amazon,” Sarah joked. “It’s like one of his favorite movies, and it’s so worn out because we watch it all the time.”
But that’s Declan. A neighbor described him as a creature of habit. He watches sports habitually. He plays basketball habitually. He wears jerseys habitually.
These things make him tick. More importantly, they allow him to live as normally as he can.
Declan was born a healthy baby.
It wasn’t until he turned three that Declan was diagnosed with Hunter Syndrome, and even then it wasn’t a simple thing to diagnose.
Declan’s pediatrician didn’t suspect anything. His occupational therapist thought his breathing was off, but Sarah says she wrote it off as allergies and asthma. He had some ear infections and respiratory issues, but again, on its own, those traits didn’t immediately jump out as a sign that something was wrong, especially for something as rare as Hunter Syndrome to be suspected.
It took an occupational therapist and a speech therapist who recognized some warning signs to push Sarah and her husband, Tim, to bring Declan to a specialist. It was that specialist — a genetics doctor — who finally connected the dots.
“When we got the diagnosis, we thought, this cannot be,” Sarah said. “There is no way this could be this severe. Because he was talking, and he was happy. Granted, he was a little bit sore and some things, but we didn’t know.”
Sarah and Tim started googling Hunter Syndrome, and they saw pictures of other boys with the condition.
“We were like, ‘Oh my God, they all look like him,’ ” Sarah said.
From there, the Mitchells went the only way they could: onward. Sarah stumbled onto some blogs made by mothers of other boys with Hunter Syndrome, and she reached out to them, joining a supportive community of people going through the same thing.
Sarah says new families often have a lot of questions early on, and it’s clear she knows from experience.
The Mitchells enrolled Declan in their local public school in Westfield, Ind., where he has learned in a modified classroom since he was in preschool. He has an aide, Andrew, who spends each day with Declan and helps facilitate his day.
The goal, in the end, is to make Declan’s life as typical as possible, both in school and out. For someone like him, that means keeping most things in his life consistent and familiar while integrating any new things — like curriculum or new relationships — slowly around him.
So when Declan moved to middle school, where he takes classes now, he spent the prior summer getting familiar with his new teacher, Maureen Craver.
“We just did a lot of really fun stuff just to get him excited to be in the new classroom with me and in a new school,” Craver said. “He loves basketball, so we played a lot of basketball and a lot of fun games. So I got to kind of know him that way and know what he liked and what he didn’t like.”
Craver had never heard of Hunter Syndrome before meeting Declan. Beyond the summer spent with Declan, she met with Tim, Sarah and Declan’s last teacher, to get familiar with the intricacies of Declan and Hunter Syndrome.
But optimizing Declan’s experience is a group effort. The principal, assistant principals, secretaries, teachers and even the other students play a part in making Declan comfortable.
And, believe it or not, sports come in here too.
“I think he uses it as a way to connect with other people,” Craver said. “So he wears some sort of — usually an NBA team — shirt or jersey every day. You know, he’ll, if he’s maybe a little shy around someone or if we have new peer students come in, he’ll kind of look down at his shirt all coy and use it as a talking point.
“… All the administration and teachers and staff here know that about Declan, and so if our gym teacher sees him in the hallway, she’ll say, ‘Oh, Declan, I love your Heat shirt today!’ to start a conversation. Or sometimes it’s other boys in the hallway with different sports shirts on, and he’ll go up to them and say, ‘Oh, Pacers shirt.’ So he uses it as definitely a way to connect with people.”
At home, things have changed since Declan was diagnosed.
Sarah used to work on the wealth management team at Merrill Lynch. Declan began to have some struggles in daycare, though. He was sick a lot, and because of a lack of awareness that accompanies Hunter Syndrome, he would push kids over and become irritated.
So Sarah and Tim decided Sarah should become a stay-at-home mom.
“It wasn’t a decision I would have normally made, but it was an automatic decision, like, I would just stay home with him,” Sarah said. “So for a few years, we just lived on Tim’s salary, and that was very unplanned, so things were a little tight.
“But that was just what had to be done.”
Sarah has since picked up a part-time retail job, while Tim works as a vertical sales manager for a global electrics company.
In a way, though, taking care of Declan is a full-time job, and Sarah would be the first person to tell you that she can’t do it alone. Her parents have moved closer to home to help out, and the community around her helps too.
“Probably the biggest thing is when you need a break from it, just getting out and spending time as a couple or, you know, with other friends,” said Michele Oakley, the Mitchells’ neighbor and family friend. “And by them just having a support network of people who can watch Declan or this or that. But they do an amazing job of coping with the day-to-day, and I’m not saying that it’s always rosy, because there are frustrations and concerns and all of that. But they really do an amazing job of putting it in perspective, I guess, and trying to live life to the fullest.”
None of this is to say that anybody is complaining, because whatever Declan requires in attention he gives back in happiness.
Declan likes to take walks to neighbors’ houses to play basketball. Oakley says everyone is just happy Declan can play.
He has made friends with the other children in the neighborhood, including Oakley’s son, Dylan, who passes down basketball jerseys for Declan to wear.
“I know that, like, he’s kind of a handful,” Sarah said. “He’s just kind of a busy kid with a short attention span, and like a low vocabulary. So he can be kind of a handful, but I know the people who know us, like, he’s so happy. And he brings a lot of people so much joy.
“And we always hear that. Or we’ll go to Target, and, like, we see five people that he knows every single time. And we don’t know who they are, but they know him from school or from church. He does Special Olympics basketball now too, so, people just seem to know him, and he makes an impact.”
The worst aspect of Hunter Syndrome is the degenerative part.
Declan has some problems climbing stairs. At some point, the Mitchells will need to move into a one-level home.
Special education students are allowed to attend school until they are 22. For most students, Craver says the goal is to move students into a “supported home environment,” and even get them a job. For Declan, though, that may not be possible, depending on how healthy he can stay.
“I know people who have already been through that because I have friends in the community,” Sarah said. “So I kind of know what that journey looks like, because of other kids that are the same age that are more severe, a little further ahead and a couple years older. But it’s just, kind of, nothing prepares you for it, even if you know what’s coming. It’s just kind of crappy.”
What is here now, though, is something that Declan, Sarah, Tim and everyone who knows them is thankful for.
He can still talk — things like ‘mom’ and ‘dad’ and ‘I want that movie.’ That is not a small thing.
“It sounds weird, but we’re very grateful for that,” Sarah said.
And more importantly, Declan still makes an impact on those around him. People in school hallways and grocery stores know him.
Declan can still watch Michigan football and the NBA. He is still active, still shooting hoops at neighboring houses.
“He has certain houses that he wants to go and shoot hoops at, you know, and everybody knows that,” Oakley said. “They’re fine with it. They know what his limitations are. And they’re just happy that he can do that.”
The people around Declan see to it that his life is improved as much as it can be.
The kicker is that, along the way, Declan has done the same in return.
Money is being raised to fund research for gene therapy, which is thought to be a potential cure for Hunter Syndrome, at projectalive.org. There is also a gofundme page at www.gofundme.com/projectalive. As of the writing of this article, the page has raised $2,268,810 with a goal of reaching $2.5 million.
Persak can be reached at firstname.lastname@example.org or on Twitter @MikeDPersak