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Kimberly & Steven, caregivers
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The start of a new school year can bring many emotions—sadness that summer is ending, excitement for what’s ahead, and sometimes even stress. When the global pandemic hit in 2020, parents Kimberly and Steven experienced all those and more. Their son Justin, who lives with Hunter syndrome, transitioned to remote learning for his senior year. Since school was such an important part of his life, Kimberly and Steven wanted to make sure Justin ended high school on a positive note. That meant keeping some well-established routines—so Justin could start and end his school day with a smile.
Before the pandemic, Justin’s routine included attending summer school for a few weeks to help him stay on track. Then, the week before school began, he would attend a “transition week” to get to know his classmates and spend some time with his teacher. Kimberly would take Justin to school to help make sure he felt comfortable in his new setting.
Kimberly and Steven also did their best to ensure that Justin had stability and consistency in school. Every year, Kimberly would request to have the same teacher’s aide. She knew that it can take some time for Justin to get comfortable with a new teacher, so doing this would help him ease into the year. Seeing familiar faces helped him feel grounded.
“I’d take him to go see his classroom, locker, and meet with the teacher. And I always requested continuity with his aide so that he felt comfortable.”
When the pandemic happened, Kimberly and Steven decided that full-time remote learning was best for Justin due to his condition. While this brought some challenges, both parents found ways to make the transition work. For Kimberly, that meant taking on multiple roles.
“Because I'm the primary caregiver, I've had to play a lot of different roles. All these other people that played a role in his life at school—now that fell to me.”
Since Justin’s teachers could not be with him in person, Kimberly needed to be involved in every part of his school day. In a sense, she played the role of his co-teacher, instructional aide, and gym teacher.
Justin used to be away at school for 6 hours a day. With virtual learning, home and school were now the same place. At first, Justin was resistant to learning at home and sometimes had a hard time focusing. Home used to be a place where he could relax, play, and spend time with his family. Now that his two worlds had collided, Kimberly and Steven needed to learn how to help separate school life from home life.
It was important to Kimberly and Steven for Justin to feel happy and not overwhelmed when learning at home. So they decided to focus on the things he enjoys.
“Being able to see his classmates online and play virtual games like bingo made it easier for Justin to focus on his schoolwork. It’s been good for him because he’s interacting with others. He also does well with group speech therapy. They go around the virtual room to practice conversations with friends.”
When Justin was physically in school, his daily routine included helping around the classroom—shredding papers, setting up chairs, and working the coffee cart for teachers. During his virtual year, Kimberly and Steven were able to maintain the routine by having him help around the house. He would take out the trash, help with laundry, or vacuum. Being responsible for these tasks not only helped him maintain his routine, but also gave him a sense of pride and accomplishment.
Kimberly also learned that not everything she tried would work as smoothly. For example, supporting Justin during his occupational therapy sessions turned out to be very challenging in a virtual setting. Justin would often get discouraged and sometimes angry. Kimberly felt it might be best for both herself and Justin to take a break from the occupational therapy sessions and revisit them later.
Throughout his remote year, Justin was often the one to lead the way. While he couldn’t always express his feelings verbally, his actions spoke volumes. For example, when he started bringing out old toys that he hadn’t played with in years, Kimberly knew that he was trying to find his “happy place.” Together, Justin, Kimberly, and Steven were able to find ways to make learning at home fun and comfortable.
Whether in-person or remote, think of anything that might be a new experience. If possible, consider visiting school a few days early to explore the classroom, or set up time to meet with the teacher and any new classmates.
Summer is meant for relaxing, but keeping up with routines that have been established during the school year can help ease the transition into the next one.
Try adding new things into your child's routine a little at a time to find out what works best for you and your family.
Sometimes it can be difficult for children living with Hunter syndrome to verbalize feelings. It's helpful to take note of any changes to your child's behaviors and actions.
Things may come up unexpectedly. While change may bring stress, it can also bring opportunities to grow as a caregiver and a family.
Starting a new school year can be daunting. For more information on how to navigate this transition and for more tips on school life, click here.
Kimberly & Steven, caregivers
For many families, the kitchen is the heart of the home. Meals, stories, and skills are shared. For Kimberly and Steven, it’s also a place where their son Justin can feel more independent as he manages daily life with Hunter syndrome.
Justin was diagnosed with Hunter syndrome when he was 3 years old. His parents do everything they can to make each day as happy and positive as possible—and that includes cooking meals with him. Cooking together gives them extra bonding time as they taste-test meals and explore delicious foods. It also provides Justin with more opportunities to feel a sense of ownership and accomplishment.
Justin loves cooking with Kimberly as much as he loves eating—grilled cheese, peanut butter and jelly sandwiches, pasta, and pizza are some of his favorites. And just like his dad, Justin has a sweet tooth. Both enjoy cupcakes and cookies.
But the real fun starts before it’s time to eat. Kimberly lets him help her prep the food. One of Justin’s favorite meals to make is pizza. From rolling the dough to sprinkling the cheese, he and Kimberly tackle every step together.
“When we’re making pizza, I’ll let him start to roll the dough out. Then we put the sauce on and he likes to sprinkle the cheese on. Then, I’ll put things in the oven.
When it’s done, I cut it up, and I like him to take a spatula and put a slice on his plate. He gets his own plate, comes over, puts the pizza on his plate, brings it over to the table. He really likes to be involved in the project.”
Getting Justin involved in cooking has helped him in several ways. First—and most importantly—it brings him joy. It also lets him put into practice some of the important skills he’s learned at school, camp, and occupational therapy. He can work on everyday tasks like following directions, measuring ingredients, and cleaning up.
For Kimberly, the best part of cooking with her son is watching him do things for himself. Seeing him be independent in this way brings the biggest smile to her face.
“I like seeing him achieve the tasks that he’s capable of; that gives him a sense of accomplishment and ownership with each meal—rather than just sitting in a chair and waiting all the time for someone to prepare things for him.
Even for the grilled cheese—he eats that quite often for lunch—I tell him, ‘Get the grill, plug that in, get your bread, take two pieces of cheese,’ so there are a lot of directives that I’m giving him and that he’s following. For him, it’s a sense of accomplishment and that’s really our main goal with Justin, to get him to be as independent as possible.”
Kimberly and Justin love cooking so much that they’ve created their own kitchen traditions. For special occasions like a holiday, they’ll wear festive aprons. Some days they even wear chef hats for fun.
They also like to play a game where they try to figure out the ingredients for a recipe just by looking at the picture. Cooking together is a sweet way for Justin to bond with his mom, and eating what they’ve prepared is a great way to spend time with his friends and his dad.
“When his friends come over to make pizza, I think generally he’s very excited and it’s fun for him. The challenge is, sometimes he’ll eat very fast, and we worry about him chewing his food properly. Sometimes he’s in the moment, people are around him, and he’s excited, and we’ll have to intervene to help him slow down.
He’ll be talking and eating, laughing and eating—that gets stressful for us because we’re worried about a choking situation. But he likes these types of get-togethers, so we do everything we can within his abilities. Because he’s very social. Eating is social and cooking is social.”
Kimberly and Steven make sure to balance the excitement around a social activity with the need to keep Justin safe, but that doesn’t stop them from giving him fun experiences. Their philosophy is to be cautious and vigilant while still allowing him to explore life—including cooking his favorite foods and sharing them with friends.
Kimberly & Steven, caregivers
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Kimberly and Steven are the loving parents of Justin. When their son was diagnosed at 3 years old, they embarked on an unexpected and challenging journey. Through it all, their love for Justin has fueled the determination and focus needed to help him live with his condition.
When Steven found out that his son had Hunter syndrome, he felt powerless. There was nothing he could do to make the disease disappear. But he realized there was one thing he did have control of: making sure Justin’s medical records and information were organized. Developing a system to keep everything orderly and handy turned out to be therapeutic for Steven—and beneficial for Justin’s journey.
“Organizing is a hobby for me, and it’s also very therapeutic. Thinking back to the diagnosis, I realized I couldn’t control everything; the only thing I could control was organizing his files. I started on day one.”
When Justin was diagnosed with Hunter syndrome, electronic medical records were not as common as they are today. Kimberly and Steven began to carefully label and store their son’s health information in a filing cabinet. As the world became digitized, they combined their paper records with the convenient and easy online platforms that keep Justin’s medical history handy.
Even though Steven would like to go the paperless route, there are many reasons he and Kimberly still rely on their original method. One is that it allows them to write down information they consider valuable.
“What gets lost with an electronic method is any notes taken during a visit. We have always brought the pertinent paper file with us to medical appointments, and obviously for procedures. We also have specific notes that we write down. Sometimes the electronic files we received didn’t have the level of detail we needed, but there’s information we’d like to know and keep a record of.”
Another advantage of their paper records is that they date back to the very beginning, when Justin was diagnosed.
“For example, if we’re going to a hearing appointment, we can pick up the file and run. Some practices only have a few years of electronic medical records available, and sometimes we do have to go back to our personal files to look at some baseline tests.
“A lot of times we’ve gone to an appointment and they don’t have records dating back to a certain period. We’ll have at least a physical file—surgeries and anesthesia are a big one. That’s not in any [electronic] record, but I have the physical copy.”
Kimberly and Steven’s paper recordkeeping has also come in handy in other areas of their son’s life. Even though Justin has reached the legal age of an adult, he still needs close attention and care from his parents.
“When we filed for legal guardianship when Justin turned 18, we had to fill out a medical questionnaire about all of the procedures that he had. We needed to go back into our files, our own personal files.
“If we had to rely on the electronic medical records, we wouldn’t have been able to retrieve all of that. So our personal paper records are not only useful for the medical community—we also need them for other aspects of Justin’s life.”
Transitioning between doctors can also be an emotional and logistical challenge. Kimberly and Steven recently went through it when Justin’s geneticist retired. They were sad to lose the doctor who had seen their son for 15 years—somebody who knew the ins and outs of Justin’s medical history and who had established a great bond with him. Luckily, they quickly found a new geneticist they felt comfortable with. But starting fresh with her meant answering many questions about Justin’s medical history—and some of them could only be answered with Kimberly and Steven’s physical files. Once again, their years of discipline and order helped them through this transition.
If you are in a situation like Kimberly and Steven and need a new specialist, check out our Tips for Choosing a Specialist page for guidance on selecting the right one for you.
Kimberly and Steven are passionate parents and caregivers, and they’re willing to wear as many hats as needed to ensure Justin has the best care.
“With so many doctors, keeping everyone in communication can be a challenge. So we as parents are the ones who help keep the entire team informed.
“Everybody has their subspecialty, everybody has their niche, but sometimes you’ve got to look at the whole person, and that’s sometimes what gets lost. Justin’s geneticist is the closest we have to a doctor that’s kind of looking at him as a whole person. But when you go to a neurosurgeon, they’re looking at the brain and the spine, and they’re not going to really deal with the issues with the bones.”
Filling information gaps between Justin’s doctors has become part of Kimberly and Steven’s to-do list as caregivers.
“When you have somebody seeing that many doctors, you’ve got to communicate and coordinate. We’re lucky we do have all of his appointments at one hospital, which does help for the most part. But there are definitely things that we have to communicate between his primary physician and his geneticist.”
For Kimberly and Steven, everything has its place. Just as Justin’s medical information is methodically stored in a filing cabinet in Steven’s home office, his toy collection is perfectly organized in a row of bins in the basement.
Justin enjoys playing with the toys he had as a child, so his mom and dad have kept them around for all these years. But chaos can easily ensue from having a lifelong collection of toys in the house. Knowing how much joy playtime brings to his son, Steven was happy to take on the challenge of keeping the toys in order.
“Justin has toys from all different ages. He likes to play with wooden tracks, which he got when he was young. We have to keep those in one big bin and his electric trains in another bin. We’ve got all his toys from when he was little, and he plays with them all the time.”
Playing with their son is one of the sweet things in life for Kimberly and Steven. It allows them to bond with Justin in a world built by him—a world where the key characters are Mom, Dad, and fun. Putting the toys away is also part of the game. This is how Kimberly explains it:
“When we’re putting things away together, we’re kind of being brought into his world, and he enjoys that. He’ll pick up something and I’ll say, ‘Oh, let’s put the blue train away,’ and he’s like, ‘Oh, do you like the blue train, Ma?’ So, it’s an opportunity for us to enter his world.”
Like any loving parents, Kimberly and Steven’s goal is to make sure Justin is as healthy and happy as possible. That’s what fuels the unwavering determination with which they keep important information and other parts of their home carefully organized. It’s good to remember that every family has their own style—but having a system that keeps all your ducks in a row can go a long way.
It’s helpful to have a system for organizing physical files, including notes taken at appointments. These files can come in handy when details are needed that are not in the electronic records.
Digital files can be a good complement to paper records. They can save space and time spent on paperwork.
Calendars—whether digital or physical—are great tools for organizing and visualizing appointments and events. They’re especially helpful when seeing multiple doctors.
Organizing toys and electronics in labeled bins makes them easier to find and put away. This is especially helpful for a child who has toys from all ages.
Inviting family to help keep things labeled and organized can be a bonding experience—and even an opportunity for fun!
Kimberly & Steven, caregivers
As with any parent, Kimberly and Steven want the best for their child, but the best doesn’t come easy. Their son Justin lives with Hunter syndrome, and their journey has been one of nonstop advocacy. They’ve learned along the way that being collaborative, flexible, and open-minded goes a long way.
Every year before school begins, Steven and Kimberly visit Justin’s new teacher to make sure he gets the most out of his time in school. For example, they need the teacher to wear a device that connects to Justin’s hearing aids and allows him to follow what’s happening. They also check out the room. They know from experience that there are ways to set up the room that work better for Justin. For example, he gets distracted easily, so it’s best to have a space set aside for him with dividers.
“School systems don’t always recommend what you need, because those things cost money. You can’t be afraid to ask for things. Even unconventional things. I asked for a therapy dog to come in on a regular basis. It really helped him.”
Most of the time, the teachers or administrators are able to address the needs and are happy to do so. But sometimes, though the teachers wish they could help, they lack the authority or budget. Other times they’re simply overwhelmed and don’t want to add more to their plate. Either way, Steven and Kimberly are polite but clear: they understand, but they’ll be continuing the conversation with school administrators. That may mean the principal, a special education administrator at the school, or even the director of special education for their district.
They’ve learned that “no” is not the end of the conversation—even if it’s the end of THAT conversation. They’ve seen the difference it can make for Justin to have the right tools, the right help, and the right opportunities. They keep going until they find the person who both understands those needs and can respond to them.
Kimberly and Steven have seen other parents of special needs children who are quick to threaten schools with legal action or outplacement to get what their child needs. Both are costly for the school. They’ve found it highly effective to gently remind the school that they would prefer to keep Justin there if the school can meet their needs.
“Some parents feel at the mercy of the school, and that's obviously not good. Others want everything 100% their way and sort of get tunnel vision. But what we've seen is that it can be limiting.”
“We understand, because sometimes you have a visceral reaction because you’re so ready for them to sell your kid short. We’re so used to having to fight for Justin that sometimes we’re sort of ready to be offended when there really isn’t any offense going on there.
“We try to be open to what they’re showing and get the real facts. Because the educators have experience, and they draw from that knowledge. They may have an idea that will work better than what we had thought of. So you have to be open. Somewhere in the middle is what we aim for.”
This approach has worked for them over the years as they’ve built relationships with school administrators. Kimberly and Justin believe that most people want to help, even if they’re not sure how to right away. For them, it’s helpful to go into each new situation with an open mind and a positive outlook—while still standing their ground.
Kimberly & Steven, caregivers
As you read Kimberly and Steven’s story, please keep in mind that some of the decisions caregivers will make as they take care of their loved one are personal, and that there are not always right or wrong decisions.
The long road of parenthood is filled with choices, and parents of children with Hunter syndrome may face hard ones from time to time. For Steven and Kimberly, a big dilemma arose in the early school years of their son, Justin.
“We came to a crossroads. We spoke with an educational consultant and he said, ‘You’re at a point where you need to make a decision about whether you’re going to continue along the academic path and really push those skills, or you’re going to go down the social and communication path.”
“That was a really hard thing to hear, because we obviously want all of it. But we listened, and we made a conscious choice at that point to continue with his academics, but not make that the focus.
“It was a huge, life-changing moment for us. Of course, every family has to make their own decisions. But for us, it was the best decision we ever made. He has a life-threatening condition, and honestly, we didn’t know how long Justin was going to be with us. We have no guarantees. So we try to make life special every day."
And so Kimberly and Steven decided to invest their time in creating opportunities that would help Justin belong in the community. They kept him in a mainstream school so he could stay with the peers he’d known since elementary school. They placed him in extracurriculars so he could be among kids without Hunter syndrome and be able to connect with them. And they put in the work and planning to create seasonal parties so Justin could play with his peers and embrace his community.
Kimberly & Steven, caregivers
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Kimberly and Steven are devoted and loving parents to Leah and Justin. Being a parent is never easy, and being a parent of a child with Hunter syndrome has its own challenges. Kimberly and Steven’s son, Justin, was diagnosed at 3 years old. His Hunter syndrome symptoms included some cognitive delay. During his early childhood, that wasn’t a problem with his peers. But as elementary school progressed, his parents saw a wave of rejection starting to grow. Kids began to find their social circles through sports and other interests, and playdates became trickier as Justin’s behavior became harder to predict and control.
“There was a girl on our street playing with the other neighborhood kids, and when she’d see Justin coming around, she’d start saying, ‘Justin alert! Justin alert!’ Because they knew he could be a handful sometimes.”
And Justin wasn’t the only one people didn’t want to be with. Steven and Kimberly faced rejection by other parents.
“There was another family we knew. Justin and the boy were friends, and we and the parents were friends. But once they started to see that Justin had some category of special needs, they didn’t want their son hanging out with Justin anymore. They basically just cut all ties with us. That’s just one. There were a lot of difficult moments, hard moments for us.”
But Steven and Kimberly were not diminished by difficult moments, and they are not the type of parents to let challenging moments define their son’s childhood. “Did I cry? Yes, for my son. For myself,” admits Kimberly. “But we sort of regrouped and said, hey, you know what, there are people that are willing to embrace him. Let’s seek those people out.”
They got an idea of how to find those people at Sunday Mass. Their priest, in a completely different context, made a joke: “The way to make new friends is to be the one with the biggest-screen TV at kick-off time.” It was a silly joke, but they took its message to heart. It inspired them to change their family’s relationship with the community.
Caring for someone with Hunter syndrome can bring about a range of emotional challenges for caregivers. To learn more about family dynamics and the emotional experiences that may arise, click here.
Steven and Kimberly decided to throw a Halloween party for the neighborhood. Their idea was to use a big, fun neighborhood event as a way to integrate Justin into people’s lives, to create a fun space for them to get to know him.
“What we’ve learned over the years is that kids like Justin are more accepted when you grow up with them. That’s because you know them as a person, not as their condition. So these kids would see that he’s different, yes, he might have hearing aids, yes, but it kind of won’t matter because they’ll have grown up with him and they’ll have accepted him and encourage others to do the same.”
The Halloween party was so successful that they then held a Christmas party, and then an Easter egg hunt, and then end-of-school-year celebrations, block parties, and summer movie nights. Soon they were a fixture on the town’s social calendar.
“It just kept growing and growing. Sometimes, the acceptance you’d expect to find in your own family, friends, and neighbors may not be there. But you have to be open to seeking things out, you have to be open to other types of people that will be willing to forge a relationship.”
And through it all, Justin was beaming, relishing his role as host. He looked forward to these events so much that he sometimes started setting up a week in advance.
“He loved setting up the tents and the decorations, and then getting to play the games, and have all these people coming to his house. He would get so excited. It was just precious to watch.”
Year after year, holiday after holiday, the momentum grew and so did the complexity of the events. They added a raffle to the Easter egg hunt and a hayride to the Halloween party. The Christmas party grew so large that they moved it out of their house to the high school cafeteria. Kimberly added an extra layer of purpose to the events by encouraging guests to bring donations for food pantries or personal hygiene products for the local shelter.
And all the good they were putting out into the community found its way back to them.
“A lot of people look at all this and say, ‘Oh, that must cost a lot of money.’ But it really didn’t. Most of it was donations. The community would bring things, we borrowed people’s tents, neighbors helped stuff the plastic eggs. For us it was really more time than money.”
“Not only did donations come pouring in from the guests at the events, donations came from local businesses for putting on the events—bagels, pizzas, snacks, drinks, candy, decorations, raffle prizes like gift certificates for restaurants, ice cream, and massages. Fog machines! 98% of people that I reached out to—small businesses, big businesses, chains—wanted to contribute. That generosity just makes you feel good. It kind of restores your faith in your local community.
Then one autumn, after 10 years of Halloween parties, Kimberly injured her foot and was out of commission with surgery during the weeks of preparation for the event.
“We’re thinking we’re going to have to cancel. All of a sudden, the whole football team shows up on the doorstep and says, ‘We’re going to help you.’ And all these other people, kids and organizations from the high school came too, and they set up the whole haunted house.
“That was the pinnacle—everybody was just there to help and lend a hand and be together. We’d spent 10 years doing this, and between Justin and the community, we were really seeing the fruits of the labor.”
It wasn’t always easy getting to that point. Though each event ended in success, each new event began with questions like, ‘Do we do it?’. Their hesitation came from the amount of work that each event required, and because they also had to keep in mind that Justin and his classmates were entering their teens. And with the teenage years comes a big shift in interests.
“We knew most high school kids are not going to be interested in spending a Friday night hanging out with special needs families. As time went on, we just tried to bob and weave and figure out what could appeal to the different age groups.
“And every year we try to say, ‘OK, this group of kids isn’t interested anymore, so let’s open it up to this other group of kids, or that other part of the community.’ If something stopped working, we’d go in another direction because he still loved doing it and connecting with the people in his community.”
So they reached out to different groups, clubs, neighborhoods, and programs that Justin and his younger sister Leah were a part of. And though their events were always big crowd pleasers, the point was never the size of the crowd.
“Though we did put it out to a lot of people, the point wasn’t to get as many people there for the heck of it. It was about the people that meant something to Justin, or he meant something to them. It was about the relationships. What was most important to us was that the people who were there really wanted to be there.”
The events had a lasting impact. Justin went to prom, and that same football team who set up for Halloween was there to cheer him on. Kimberly remembers, “Everyone on the team embraced him, and they said the highlight of their night was getting him onto the dance floor.”
But Steven and Kimberly also had a long-term goal beyond playdates and proms: positioning Justin to take his place in the community. That was one of the reasons they chose to keep him in a mainstream school rather than in a school for students with different conditions.
“The people in most communities don’t have the chance to get to know a lot of the special needs children. When we looked down the road we said, ‘What is the ultimate goal for Justin?’ Well, he needs to have some type of meaningful employment in our community. In that case, the community needs to know him. So that was something that we were trying to accomplish.”
The seasonal events were just one piece of that goal. An article in the local paper looked back 10 years at a story they had published when Justin was 8 years old. The story detailed how his passion for trains had led to the creation of a new just-for-kids section at the prestigious tri-state annual train show: “Kids Town, USA.”
“Justin always loved going to the train show—they have trains out on display but they don’t really want kids touching them. So when Justin was eight, I asked the organizer to let him create a hands-on experience, putting out all his toy trains and letting kids actually come and play with the trains. It started as a little tiny corner in a closet area, and became a much bigger experience.”
Ten years later and his “Kids Town, USA” has grown into one of the train show’s main attractions. Justin hosts and uses the opportunity to give back to the community by collecting donations to help the homeless.
Eventually, participating organizations took on some of the hosting, organizing, and set-up work for the events. This lifted a large weight from Kimberly’s shoulders.
Long before the big-screen TV moment, Steven and Kimberly had another, very different type of conversation with their priest. It was just after they’d gotten Justin’s diagnosis and just after their daughter Leah was born. They were overwhelmed with what the future might demand.
“Our priest said, ‘Someday you’ll look back on this and you’ll say, look how far we’ve come.’ And at that time, it was difficult to really grasp that. It’s just so daunting when you get the diagnosis.
“But what he said did give us some hope, sort of helped us see it as ‘There’s a journey here that we need to take and someday we’ll be looking back on the journey, on our journey, and feel proud.’ It hasn’t been easy, and it’s still not easy. But, you know, we’ve hit that moment. I think we both can honestly say he was right. He was right.”
Private patient/caregiver groups can be great places to make friends, ask questions, and share experiences.
Patient advocacy groups can be very effective ways to connect with like-minded people working to improve issues that impact you.
Ask your healthcare provider’s office or social worker to connect you with families living with similar conditions in your area.
Hosting neighborhood events or joining school organizations are great ways to build connections with the people around you.
Oftentimes, people may not understand the sort of support or connection you need. Tell them. Explain what you need, why it’s important to you, and how they can show up for you.
