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Avram & Monica, caregivers
Listen to Avram and Monica’s full interview
Monica and Avram are parents to 3 wonderful children. Because their oldest son, Kalel, is living with Hunter syndrome, they’ve never thought of themselves as a “typical” family. But it’s this difference that has brought them closer together. In this interview, Avram and Monica talk about the impact the disease has had on the family, and about the incredible amount of love they all share.
You can listen to Monica and Avram’s full interview, or read the highlights below.
Please note that Avram and Monica refer to Hunter syndrome as “MPS,” which is an alternate name for the condition.
MONICA: Let’s start with Kalel since he is the oldest. He is energetic, happy, and the sweetest child you will ever meet. He’s very resilient and strong. Next is Logan, our middle child, who’s eight. He is compassionate, extremely smart, and very loving. And then we have our littlest, Anaya, who is one and she is the sweetest, funniest little girl you will meet. She has such a great bond with her brothers already.
AVRAM: We call Kalel the Sour Patch Kid. because first he’s sour, and then he's sweet. He gets a little aggressive sometimes, but he does it for a good laugh. He's not doing it maliciously. Logan is an amazing kid, because he's the one that understands and is able to cope with all of the crazy chaotic stuff that Kalel does. And he's always the reminder that keeps the bonds strong. Then Anaya is our toughest little cookie. She gets teased by both her brothers and does it with a smile on her face. So that’s our little family.
MONICA: It was very tough. Kalel was three and a half when he was diagnosed. So, Logan was two. They're a year and a half apart. It was difficult to explain it to him. He would ask, “Why does Kalel have to go to the hospital, is he going to have to go to the hospital forever?” We explained to him that Kalel was sick, he had to go to the hospital to get medicine, and that we were trying everything that we could so that one day, he wouldn't have to go to the hospital.
Logan would come with us to the hospital. He would sometimes cry, but we explained to him that it was going to help Kalel. And although he was very young, he was understanding the concept. We've been getting through it as best as we could and just go explaining as he is able to understand.
AVRAM: I think since Kalel’s diagnosis, Logan has been there every step of the way. We didn't hide much. In fact, at every presentation we've ever done for the MPS SuperHero Foundation, our nonprofit organization we created after Kalel was diagnosed, after both Monica and I speak, Logan gets on the microphone, and he ends our presentation with “Please help me save my brother's life.” It has been very impactful. A lot of the times we received so much hope and I honestly feel like Logan had a big part in all of that.
But it’s hard for him. I think the biggest obstacle that he faces is seeing all his peers, his cousins, and their siblings, and the relationship with each sibling. And he never had that opportunity.
– Avram
MONICA: I remember shortly after we brought Anaya home. He was holding her and he was kissing her. Logan said, “Mom, does she have MPS?” And I said, “No, baby, she doesn't.” And he's like, “Mom, you promise?” He was so excited to know that he had a sibling that was not diagnosed with MPS. And that was a crazy moment for us as well.
AVRAM: One of the biggest decisions we thought long and hard about was if we wanted to separate them. Both Logan and Kalel got accepted into a charter school and we were excited. About 3 years ago, Kalel went in for one day, and halfway through the day, we got a call saying he needs a diaper change. We sat down with the principal that same day, and we realized that this wasn't going to be the right school for his needs.
We had to make a decision. Do we leave Logan in that school? Or do we take him along with Kalel wherever the next school is? We decided to ask Logan, and I kid you not, his response was that “I want to go to school with Kalel. Because if somebody bullies him or treats him bad, he's not going to be able to tell us.”
I think maybe that's what we wanted to hear, but then we recently went to an MPS conference. We got to talk to a lot of siblings that were in the same situation just years ahead. We even spoke with some of the parents.
– Avram
After that conference, we decided to ask Logan again and be as transparent as possible. We explained that the academics at the new school was a better program, and all his cousins would be there as well. We let him know that Monica and I were going to do our best to find the right school for Kalel. After we explained it all, Logan said he was okay with going to a different school than Kalel. So we signed them up and this is the first year they're going to separate schools.
Logan has to create his own identity. And last year, he didn't have that. He was Kalel’s little brother. Of course, his classmates knew him by Logan. And eventually everybody learned his name, but he was always Kalel’s little brother, and Kalel’s famous at every school he goes to.
MONICA: Kalel loves Logan. I always tell Logan, you are his favorite person in the world. Anytime that we go to the hospital and get a toy from the treasure chest, he asks, “Can I get one for Logan?” When he comes home, that is the first person that he asks for. He loves to play with him. He loves to push him too, because he likes his reactions. But he absolutely loves him. He hugs him and kisses him and is always talking about him. That’s been since Kalel was a baby. We have a picture of Logan and Kalel at the hospital when Kalel was a year and a half old, and he's holding Logan. The way that he was looking at him is the same way.
Logan is in love with Anaya. He wants to hug her and kiss her and carry her. He has this thing that he plays with her since she was born. He always would say, “Booga booga roar!” And now Anaya responds with “Roar!” He has an amazing bond with both of them and he adores them so much.
MONICA: I don't think I have really thought about how we're going to explain it to her. In my mind, I figured it'd be a little bit easier, because she was born when Kalel was already diagnosed. Compared to Logan, it was life-changing because we were home all the time with both of them. Then our lives changed when Kalel was going to the hospital. A lot changed when Logan was born versus Anaya being born, and this is our life. I feel like this is all she knows and all she’s going to know.
AVRAM: Yeah, that makes sense, because Logan had to witness the transition that we're going through versus Anaya growing up this way. I feel like the conversation would be a little bit easier too because she's already witnessing firsthand how it is.
“Our biggest takeaway is that there's going to be a stronger bond between Logan and Anaya. Because they will be the only ones that truly understand each other in dealing with a sibling with MPS.”
– Avram
AVRAM: So hopefully, when that time does come, I’m sure she’s going to have a lot of questions and we’ll answer them as transparently as possible, just like we’ve done with Logan. But at least this time, we’ll have a third person there to help describe it in a way that a sibling would understand.
The easy part is knowing there’s something wrong. The hard part is explaining how to cherish the moments that we have, because we don’t know how long it’s going to last. That part alone is going to be the toughest conversation to have.
MONICA: The way that I tried to explain it for Logan is that every child is different, and every child needs different things. Kalel may need more attention while he’s eating or while he’s doing schoolwork or something, whereas Logan is more independent. I try to redirect his thoughts to be grateful for the blessing that he is a typical child, and he is able to do all these things.
I remember when Logan was younger, before even starting school, one day he said, “I want to have MPS.” That broke my heart. I explained to him that Kalel has MPS and maybe he sees the treatment as fun because Kalel gets to play, but he’s not thinking about all the other things he has to go through. Kalel has to go to the hospital and go to many doctor’s appointments. I told him, “I don’t think you should wish you had MPS. Remember that you are Logan, and he is Kalel. And you guys are very different. And we’re going to give you each what you need as an individual.”
AVRAM: I have Logan on such a high pedestal. I expect so much of him that sometimes when he makes a comment like that, I—I have to really think about what I’m going to say next. I get frustrated hearing something like that.
– Avram
MONICA: To the best of our ability, we try to coordinate so that things don’t fall on the same day or at the same time. So that way we can give our full attention to each individual child, depending on their needs. There are times when something may fall at the same time. Fortunately, for the most part, we’re able to coordinate so that we can all attend. As a family, we always try to like stick together, especially for games and those type of things. There were a few times where I was able to take my niece with us. I asked her to go for a walk with Kalel while I watch Logan’s game. She’ll take him to the playground, and then he’ll come back to cheer on Logan, or he’ll try to run on the field and give everyone high-five. We try as much as we can to do everything as a family. Even though it’s a lot more difficult to do so, it’s our life. Our life is not easy, but we try to embrace it to the best of our ability.
AVRAM: We’ve dedicated a medicine day for Kalel, so we never schedule anything during that time. If something pops up and we have no control over it, then it is what it is.
MONICA: We’ve always really tried hard to make it a fun day for him. We also have tried to give Logan a “Logan Day.” Either Avram or I will take him out to do something fun, and the other parent stays back with Kalel and Anaya. I think that has really helped Logan a lot because he understands there are times that we have to fully focus on Kalel, but we also have time where we fully focus on him.
“We hold each other accountable for being the best parents we can be. I have a really great partner. Monica is the real rock. She makes things a lot easier for me.” – Avram
MONICA: Try to do the best job that you possibly can. Every family is different. And you don’t have to be like anyone else. Be whatever you want to be. You have to find a way to be happy, even when things are rough. Always try to count your blessings.
“What helps us through the hard times is refocusing our thoughts on the reasons why we are grateful rather than focusing on whatever the burden is at the moment." – Monica
AVRAM: You have your kids, and then you have Kalel, Logan, and Anaya. They are each an individual person, and yet they are also a group of kids, right? You have to learn to differentiate at times and separate them from the group of kids. Remember that Logan is his own person, and he needs his one-on-ones, and Anaya is her own person, and she needs her one-on-one time. And the same thing for Kalel. There’s no right or wrong way. I feel like because this is uncharted territory for most families, it’s not of the norm. It’s not typical. You’re going to be different. You’re going to stand out. Make sure that you’re happy when you’re doing it.
Avram & Monica, caregivers
Avram and Monica are many things to each other. They are best friends, soul mates, and loving parents to 3 wonderful children. They are also caregivers of their oldest son, Kalel, who is living with Hunter syndrome. Their day-to-day life can have many ups and downs, but Monica and Avram have learned how to find balance while also finding time to take care of themselves. Together, they share their experiences on how they work together to set boundaries while still maintaining a strong family bond.
Avram and Monica have learned that life with Kalel can sometimes feel a little chaotic and, depending on his behavior or mood, unpredictable. Some days Kalel is making a mess in the house. Other days, Avram and Monica find it hard to help Kalel get all of his energy out. And they’re not just focused on taking care of Kalel–they are also caring for their 2 other children, Logan and Anaya. On top of that, they also run a nonprofit organization.
While they understand the reason for Kalel’s behaviors, there are some days when they feel downright frustrated. When one of them notices the other seems tense, they have learned the importance of stepping in to help.
“Even if it’s a hard day for both of us, but one of us is a little more on edge, you have to take a deep breath and say, ‘Okay, I'll step in today. I'll let you take a break.’ Because this journey can feel like a roller coaster.” – Monica
Avram and Monica also know how important it is to continue to listen and communicate with each other. They don’t hesitate to share their feelings openly. One reason for that is they feel very few other people can relate to what they are going through. While they have a great support system, their level of being able to understand each other is unmatched.
In addition to being open and honest with each other about what they’re feeling, Avram and Monica also encourage each other to find time to be alone and focus on their own needs. It can be difficult to get away, but they both agree it’s needed. Everyone deserves a break.
For example, if Avram notices that Monica needs some time for herself, he will grab the kids and go for a long drive. Sometimes he’ll stop at the grocery store and pick up a few things, or he’ll take them to the park. This approach works well for both Monica and Kalel. Monica is able to get some alone time, and Kalel can calm down or let his energy out.
Avram also likes to drive on his own when he wants some alone time. He’ll listen to audiobooks, especially ones that are motivating and inspiring to him.
“It helps to hear stories from other people who are facing adversity and get different perspectives on everyday life. I like to daydream about how to shift, or change, to be a better person, father, or friend.” – Avram
When Monica is able to take a break, she really enjoys meditation, and even considers it a lifesaver for times when she’s feeling anxious. She uses the time after meditation to express how she’s feeling to Avram or her children.
Monica also tries to get out and spend time connecting with her friends. Whether it’s over dinner or just talking on the phone, it feels good to disconnect for a bit and enjoy a chance to socialize and feel supported.
Finding time alone to practice self-care is important, but Avram and Monica also try to find times when they can be alone together, without their children. They feel fortunate to have family nearby who can help take care of their children. So they try to plan a date night every week or so, where they drop their kids off at a grandparent’s house. Their favorite date nights include going to dinner and seeing a movie, or going out and spending time with friends.
“Those type of moments help because we’re completely disconnecting and trying to have a good time. We talk about different things that have nothing to do with Hunter syndrome. That helps us get a little breather from our everyday life.” – Avram
No matter what challenges the day holds, Avram and Monica face them together–a united front full of love.
Whether it’s for 10 minutes or an hour, work with your partner or loved ones to set aside time when it’s all about you.
If you see your partner or loved one frustrated or upset, ask what you can do to help. And when you feel that way, remember to communicate how you’re feeling.
Sometimes it can be helpful to create some space for yourself or your loved one. Avram likes to go for a drive to decompress. Other times, he’ll grab the kids and go out to allow Monica some time to herself.
Think about the things that make you happy. For Avram and Monica, it’s meditation, listening to audiobooks, and spending time with friends.
When you’re feeling burnt out or are looking for advice, support groups can be a great resource. Someone else may be going through a similar situation and can help cheer you on.
Avram, caregiver
As you read Avram’s story, please keep in mind that this is Avram’s personal experience and should not be taken as advice. This article does not imply an endorsement from Takeda for the organization mentioned.
Avram and his wife Monica’s world changed when they found out their son, Kalel, was diagnosed with Hunter syndrome (also known as mucopolysaccharidosis type II, or MPS II).
Since day 1 they have made it their job to educate family, friends, and their community about this rare condition. They started small with events to help raise awareness and funds for research. As they gained momentum, Avram and Monica decided to form the MPS SuperHero Foundation, a non‑profit dedicated to Kalel.
In this interview, Avram shares how his foundation was created and what continues to motivate him, and offers advice for other families seeking support in this small but mighty community.
We were bombarded with this diagnosis. Before we even received any materials from Kalel’s healthcare team, Monica and I started doing our own research. We had no knowledge of how to run a non-profit organization, or really what advocacy meant.
It is hard to focus on anything else when you hear that kind of news about your son. During this time, we attended a conference held by a non-profit to learn more about Hunter syndrome. We collected so much information that we were overwhelmed, but we also wanted to help other people like us.
My father actually had a friend who knew how to set up a non-profit organization. After that conference, we gave my father’s friend all the information we had. This helped piece together our organization.
Kalel was diagnosed in April, and by the end of July, our organization was up and running. We didn’t really know what we were doing, but we knew we had to start this. Little did we know that we had this huge journey ahead of us.
Coming back from that first conference, Monica and I knew 3 things that turned into our bylaws:
1
Help every family in any way possible2
Raise funds for research3
Advocate and be the voice for children with Hunter syndromeThat’s what we decided to start off with. We kept it as broad as possible so that we were able to tackle every angle.
We ended up coming across a couple of other organizations that were as small as ours, some of them even smaller, and they were in for the same mission. We decided to work together in raising funds for research.
“It was at that point we started doing our events. We held what has become our annual event called the Kickin’ for a Cure Kickball Tournament. We got firefighters, police officers, government officials, anybody that you can think of to come out and support us.”
From there, we started doing presentations for local towns to help promote our events and request donations. Some of these towns ended up officially declaring May 15th as MPS Awareness Day.
These small things didn’t seem as big, but when you start putting them all together, we created a movement that was fulfilling. But we weren’t filled. We were happy doing it, but we would not stop, and we’d do it again.
As I mentioned earlier, it started out as a kickball tournament, and we were so surprised to see the turnout. It brought so much more attention to the organization and many people wanted to start helping.
What ended up being something that started as small as a family gathering evolved into events that got bigger and bigger. It got to the point where we were pretty much all over South Florida. And then it started making its way north. We have support in North Carolina now, thanks to my niece. She started pushing and getting her parents heavily involved in North Carolina.
And then it grew in the virtual world. Anyone that would search “Hunter syndrome” or “MPS” would end up seeing our work. The organization started getting more attention from other non-profit organizations or other people that just wanted to help. We didn’t expect it to get this big. And it was all part of what I call collateral beauty.
All of these organizations started coming together to raise money to help fund clinical research trials. We raised a lot of money, and we didn’t think it would get that big. But it did.
“As I look back, it’s one of those moments of feeling proud to know that we did one small event. Then the next event was a little bit bigger. And the one after that got even bigger. You put all of these together and see what impact you’ve made.”
You have some families who are so dedicated. They do not sleep and they continue on. I’ve met a lot of these personally, and I really look up to them. Some of them are my mentors. Then, there’s some families that feel like they just want to enjoy whatever time they have. They don’t want to exert too much more energy on trying to do something for their child instead of just being there for their child.
There are some families that are heavily involved and some that are not, and that’s okay. I cannot judge someone on their level of commitment towards advocating for not only their own child, but for all of the children with Hunter syndrome.
We’ve had many instances where a big obstacle would be presented in front of us. When I was in high school, I had a teacher that told me there was a group of people that used to live a long time ago, and they had their own tribe.
The biggest rule in their tribe was to not worry. If there’s something you can do about it, then you shouldn’t worry—you should go out and do it. If there’s nothing you can do about it, then you shouldn’t worry because there’s nothing you can do about it.
“That is how we pretty much tackle every situation, obstacle, wall, or barrier. We will knock on a door and if we can knock it down and it worked, then great. If not, then we would move on to the next. We can’t allow ourselves to stress or dwell over any barriers. You can’t move forward that way.”
I think Kalel’s diagnosis story is very similar to other families, but it’s about being able to have the right person hear your story. I have a list of families that are far more interesting than myself and they’ve done so much more work than I’ve ever done. They are the definition of people who move mountains.
So when I get approached by healthcare providers or anyone else for that matter, I think about what my mentor would do. He is such an important person in the Hunter syndrome community. If I could follow his exact steps in life and do what he did, I would feel more fulfilled.
So when I am working with others, I try to think, “How would he approach this response?” It’s definitely a big shoe to fill, but if my foot can fit halfway through his shoe, then I feel like I’m doing a good job.
It’s overshadowed by the life of a father. People look at us and think we’ve done so much. People think that we’re great parents for doing what we do. Don’t get me wrong, I appreciate all the nice things, but as an organization, I don’t feel like we’ve done enough. Between moving across the country, the pandemic, and other things, we have had to put our advocacy work on the back burner.
So now, we are trying to do little things in our new hometown. For example this week, my wife and I taped posters for MPS Awareness Day all over our kids’ school. We worked together with the principal and were able to get everyone in the school to wear purple.
These small things can feel like it doesn’t create a huge impact, but now there’s a whole school that knows what Hunter syndrome is. That’s what we continue to do. If there’s a bigger project available for us, we’re jumping on it. In the meantime, we will continue to hand out bracelets that say, “I’m a superhero” and let people know about our website.
I think the number one thing that you should do before doing anything else is to sign up for the National MPS Society Family Conference. That happens every year. Not only are you going to meet so many families that are in the exact same position as you are, but you’re also going to meet other families that have already started their journey. These families have moved mountains and parted seas and have so much information to share with you.
I’d recommend that all families should join one of the private social media groups about Hunter syndrome. We’re such a close-knit community. As a parent or guardian, that is a great place to go. I’ve learned so much information. I’ve had so much support. I’ve had so many positive experiences.
Even for certain medical procedures, it can be helpful to reach out to the group and see if anyone has advice about a similar experience. For instance, Kalel needed a procedure that would lengthen his Achilles tendon because he had a common symptom called tiptoe walking. His heels would never touch the floor.
His healthcare provider recommended this procedure, but my wife and I went on to our social media group and asked if anyone’s child went through this. Immediately, we got 20 different comments. There’s so much information presented in front of you that you’re able to make the best educated decision for yourself.
I try to funnel all the information I get and grab the bones of it all. Then I do my own research. I like to look at different medical articles and websites to compare and contrast all the information that was given to me.
I think the biggest takeaway is to ask anyone for help and the worst thing that they will say is no.
That’s all I’ve ever been trying to do, is just knock on someone’s door. And if they open, I’m pouring my heart out and hoping they let me put a foot inside of their door. And if not, it’s okay, because there’s a whole neighborhood that I have to get through.
Avram & Monica, caregivers
Moving to a new state or town can be a big change for any family. For father and caregiver Avram, it was even more challenging because he and his wife, Monica, were moving for their son, Kalel, who is living with Hunter syndrome. The decision to uproot their family and move from Florida to California was not easy. They knew they’d be leaving friends and their large, extended family behind. But it was something they knew they had to do to ensure Kalel was getting the specialized care he needed.
Once they’d made the decision to move, Avram and Monica faced the difficult task of explaining it to their children, family, and friends. They knew that the news would be hard for everyone. Avram comes from a large but tight-knit family. He’s one of 20 cousins—and is close with every one of them. How would his children feel knowing they would be thousands of miles from their cousins and friends?
Their decision to move also happened very quickly, so there was little time to prepare. Avram and Monica first told their children. Kalel is their oldest and most outspoken. Logan, their middle child, is wise beyond his years and helps Monica and Avram take care of Kalel.
Avram and Monica also have a daughter Anaya, who was born after they moved. They consider themselves a family of superheroes who band together when things get tough. Avram and Monica explained that the move was part of the family’s mission to continue to find the specialized care Kalel needs.
Kalel at first didn’t understand the concept of moving to a new home—let alone a new state. Because of his condition, Kalel’s cognitive function isn’t the same as other children his age. He didn’t get that his cousins, who lived down the street, would now be hours away. He just took it as another adventure.
Logan, who was 5 at the time, took the news the hardest. He would have to leave behind all his friends at school. But once Avram and Monica explained their “mission,” Logan understood and was eager to support his family.
Avram was amazed by Logan’s resilience and maturity. He knew the pain the move was causing his family, but he was overcome with emotion when they responded with love and support.
Because the move to California happened during the COVID-19 pandemic, Avram and Monica decided it was safest to drive across the country. Plus, like Kalel, they viewed it as another adventure for the family.
“We jumped in the car and drove for 5 days to California. It was a good way to enter this new chapter of our lives.”
The original plan was to stop along the way to show the kids famous landmarks or tourist attractions, but because of the pandemic, many of those places were closed. That meant long stretches of time in the car.
Spending a long time in the car came with challenges. Even if it’s a short ride, Kalel tends to get restless. To help keep him occupied and entertained, Avram made sure there were plenty of games and videos for him to enjoy. But even with those distractions, Avram and Monica still made it a point to pull over and take plenty of breaks along the way.
After the long but thankfully uneventful road trip, Avram and Monica knew it would take time for Kalel and his siblings to adjust to their new life and school. Fortunately, they had prepared before the trip to make the transition as easy as possible for everyone.
Avram reached out to Kalel’s new school to ensure they had a special education program in place. Every school may have a different type of program, and Avram wanted to make sure that Kalel was getting consistent care and education. That also meant making sure that his Individualized Education Program (IEP) was transferred to the new school.
With time, Kalel adjusted to his new surroundings. Kalel and Logan attended the same school, which was comforting for them and their parents. Kalel’s infectious personality also helped. His big smile and energy have made him famous among his classmates. Even Logan made a best friend, something Avram said he never had back in Florida.
Because Hunter syndrome is so rare, it can be challenging to find a healthcare team that has experience treating it. When they were living in Florida, Avram and Monica had to do a lot of research and work with Kalel’s healthcare providers to help them better understand the condition. Fortunately, their new healthcare team in California specializes in rare conditions like Hunter syndrome.
Avram also made sure all of Kalel’s medical records were organized and ready to share with his new healthcare team. Organizing everything beforehand allowed Avram and Monica to focus on setting up their new home.
With the kids’ school and Kalel’s healthcare team in a good place, there was one thing missing: the support of nearby people who are familiar with Hunter syndrome and the challenges it brings. Back in Florida, Avram and Monica had such a support system in place. They could turn to family and friends to help watch Kalel and his siblings, or simply to talk, because these people understood what they were going through.
Avram and Monica did connect with other families in their new city, but it wasn’t the same as in Florida. They found it difficult to explain Kalel’s behavior. He can be impulsive—you never know when he might act out. Most of the time it’s coming from a good place, but when others don't understand Kalel's condition, it causes a lot of stress and anxiety for his parents.
So even though their extended family couldn’t be there physically, it was important for Avram and Monica to maintain communication. When they first moved, it was tough. The time difference made staying in touch difficult.
“It felt like the stock market—you look at something that goes up and down. That's how our communication went. But even if I didn't talk to them for 5 years, it's the type of bond where we pick back up right where we left off. That’s just the type of family that I have.”
It took some time, but everybody made an effort to make it work. Avram’s extended family—cousins, grandparents, nieces, and nephews—even flew out and visited them in California. His family understood how hard it can be in a new place with no family, and they wanted to support Avram, Monica, and the children in any way they could.
Moving 3,000 miles away has come with many challenges, but through it all, Avram and Monica have learned that no matter the distance, the bond with their family will always remain strong. And that’s made all the difference for Kalel.
Try thinking of all possible scenarios and prepare for them by making a list. Do movers need to be hired? How long will the actual move take? Have you reached out to the new school? Do you need help with packing? Do you need to schedule any meetings with your child or loved one’s current school?
It may take a lot of time putting this together, but it’s important to make sure your child's new healthcare team is ready to go. Remember to contact your insurance company to make sure any new healthcare providers are still in your network, too.
Avram wouldn’t change anything, but he recognizes that this move was especially challenging due to Kalel’s condition and need for constant supervision. If possible, consider reaching out to family or friends who can help watch your child. That way you can focus on packing and the move itself.
Try to find as much information as you can about your child’s new special education program. Consider joining a social media community to see if any other families have information or can help.
Before you move, make sure you meet with your child’s current school and go through their IEP. It needs to be up to date to be passed on to the next school. There were delays in Kalel’s transition to his new school because of a few minor wording issues.
Avram, caregiver
Listen to Avram’s full interview
“A huge chunk of collateral beauty comes from the Hunter syndrome community. Somehow, we are the only ones who truly understand one another.” —Avram
Avram is the proud father of 3 children, the oldest of whom is living with Hunter syndrome. In this candid interview, Avram shares how his family has navigated life’s ups and downs since his son’s diagnosis. He also offers practical stories on how he has managed his son's cognitive and behavioral challenges.
You can listen to Avram’s full interview, or read the highlights below.
My name is Avram, and I have a beautiful wife, Monica. We have been together for 14 magical years and have 3 amazing children: Kalel, Logan, and Anaya. Our lives changed forever on April 29, 2016, when my oldest, Kalel, was diagnosed with Hunter syndrome after his third birthday.
To tell you more about our family—I’d like to think of myself as a fairly passive guy. I’m happy most of the time. My wife, Monica—she’s the true blessing in our family. She’s the sweetest lady you’ll ever meet, with a heart of gold; she’s definitely the rock of our family. Anaya is our warrior princess—she’s only a few months old, but I can already tell she’s going to be something special.
Logan is our 7-year-old, whom we named after Wolverine. He’s the younger big brother who takes pride in keeping our family balanced with his sense of humor and tenacious personality.
Kalel, our 8-year-old, is named after Superman. He’s the wild child of our family—he keeps us on our toes! We gave him the nickname Sour Patch Kid because first he’s sour, then he’s sweet—one of the sweetest kids you’ll ever meet, actually. His smile lights up the room. Kalel is also the loudest one in our family, and he shows off his skills bright and early every morning. When you put us all together, we’re the superhero family!
After Kalel was diagnosed, Monica and I founded the MPS SuperHero Foundation. We’ve been active in the Hunter syndrome community since 2016. We have presented and advocated at conferences and hospitals and talked to healthcare providers and other parents as well.
Kalel was born on January 6, 2013. Monica noticed that even as a newborn, Kalel had a slight breathing issue.
Kalel also had childhood problems like ear infections, tonsils, adenoids, and other issues. When your child has all of the “common” issues, things don’t seem common anymore. Monica was already raising concerns to the pediatricians when Kalel was a month old, but these were dismissed. By 6 months, she insisted on a referral to an ear, nose, and throat (ENT) specialist, who assured us that he would stop snoring by the age of one. After Kalel turned one, we saw the ENT specialist again.
By two, Kalel started speech and occupational therapy because his mom was worried about his clumsiness and speech delay. Kalel also developed hydrocele and an umbilical hernia, so we consulted a pediatric surgeon who was very well known in our area. He advised surgery, but she wanted a second opinion.
We met another surgeon and she did something different from every other doctor we saw. She said, “Let’s start from the beginning—tell me everything you’ve noticed about Kalel and any history of disease in your family.” Before we could leave her office, she made us schedule an appointment with a geneticist, because she saw the bigger picture and suspected an underlying issue.
When the geneticist laid eyes on Kalel, he immediately told us he thought Kalel had mucopolysaccharidosis type I (MPS I), which is also known as Hurler syndrome. He pointed out Kalel’s claw-like hands, coarse features, enlarged head, and short stature. Of course, I told him he was wrong! I said Kalel had his great-grandfather’s hands, his grandfather’s eyebrows, and his mother’s head, and he’s Hispanic, so he’s supposed to be a little short.
“I was furious because I was scared. How could I not be afraid? I searched MPS on Google and the word mucopolysaccharidosis wasn’t even in my vocabulary. I didn’t understand what the Internet was saying, but I knew what ‘death before teenage years’ meant, and losing the ability to walk, talk, and eat independently. This isn’t something any parent wants to even think about. I had to stay positive and keep hope and faith close by.”
About 4 to 6 weeks later, Kalel was negative for MPS I—but the geneticist said he was sure Kalel would test positive for MPS II, which is also known as Hunter syndrome. It was a big blow. Just when I started getting excited, I was shocked to find out there was another MPS Kalel could have.
Another 4 to 6 weeks passed. Finally, we went back to get the results. We held hands walking into the doctor’s office. He turned to Monica and said, “Mom, repeat after me—this is not my fault.” I felt an instant tight squeeze of my hand and the sound of my wife bursting into tears. Walking into the lobby, we didn’t need words to share the news.
Walking out from the clinic that day, we didn’t know if Kalel had the mild or severe form of disease, but soon enough we learned that if there’s any sign of cognitive delay, the child is deemed severe. Suddenly, we began to see the extent of Kalel’s cognitive delay more clearly.
“First and foremost, early intervention is key. If you think you see any signs or symptoms, get them checked out—and don’t stop there. Remember, YOU are your child’s most important advocate. No one else will fight for your child the way you will.”
To find out more about the Signs and Symptoms of Hunter syndrome, click here.
Today, Kalel is doing incredibly well. He’s a big boy now at 8 years old, although his cognitive level never passed that of a 4-year-old. In the last few years, he’s had multiple surgeries, including carpal tunnel release on his hands and fingers, tarsal tunnel release on his ankles, and Achilles tendon lengthening. All these procedures had to be done under anesthesia, which is very high-risk for children with Hunter syndrome, or any other child for that matter.
Kalel receives behavioral, speech, occupational, and physical therapy. He was prescribed hearing aids, but it’s a mission to get him to wear them. He received casting to correct his tiptoe walk. He also uses assistive therapy, like ankle-foot orthosis and hand casts, but he won’t wear any of them for as long as he needs to.
He has to see a long list of specialists regularly. There is the pulmonologist, cardiologist, neurologist, neurosurgeon, ophthalmologist, physiatrist, allergy specialist, orthopedic specialist, ENT specialist, geneticist, behavioral therapist, speech pathologist, occupational therapist, and physical therapist. He visits most of them at least two times a year. He also undergoes a sleep study, MRI, EKG, X-ray, pulmonary checkup, hearing test, and heart checkup twice a year.
When Kalel has his appointments, Monica and I take turns to go with him while the other parent stays at home. If that’s not possible, we bring Logan along, but with him there, Kalel has trouble keeping calm in the waiting room. He gets really excited around his little brother.
Taking care of Kalel is like looking after 5 kids at the “terrible twos” stage. Nowadays, we try our best to get everything done and prioritize important things, but we sometimes fall behind from exhaustion.
The cognitive symptoms started when Kalel was around 18 months old and began developing his speech. We noticed a bit of a delay. Even though he technically met the number of words required for his age, we just knew he was delayed. We got him evaluated and started on speech therapy when he was 2 years old.
Kalel still has trouble learning new things and needs a lot of assistance to complete simple tasks. At about 2 years old, he was almost fully potty trained but refused to use the potty. His attention span is also very limited. Kalel started school at the age of 3 and a half, just after the diagnosis. He slowly gained new skills until about the age of 5, when he plateaued. Fortunately, Kalel has not regressed, but he isn’t progressing either.
“Kalel has what we call a bubble-burster type of personality. If you think of your personal space as a bubble, Kalel will be the one to burst it. Once he’s comfortable with you, he’s in your face!”
If you don’t look him in the eye, he’ll pull your chin to get your attention. Because of his claw-like hands, sometimes his nails go right through the skin. Obviously, he doesn’t understand that he’s hurting you, so we’ve gotten better at bobbing and weaving over the years. With his bubble-bursting personality and repeating himself over and over again, some people give us the look, the “Um, come get your kid off me!” look.
Another behavior that sticks out is that he’ll repeat his sentences while talking, almost like he wants to make sure you’ve understood. When you respond, he’ll stop most times.
We’ve had to educate some nieces and nephews to explain why Kalel kept pushing them into bushes or didn’t throw the ball back, or why he would repeat himself a million times. It does hurt us to see other kids try to get away from him because they feel that he is annoying and bothering them. We try our hardest to advocate for him, but it can be hard to constantly be on alert that your child may upset or offend someone, especially when we know he doesn’t mean it and he’s actually a good kid.
“When Kalel is tired, he gets destructive and brings out his infamous, delirious laugh. That’s a sign in our family to run for cover! The only thing that helps is a nap. Even as an 8-year-old, he still naps! Sometimes we drag the younger “big brother,” Logan, in to play pretend naptime and help Kalel calm down and stop fighting sleep.”
We try to focus on the positives—our blessings. On the hardest days, this really gets us through. Kalel is the happiest boy you will ever meet, and he can do so many things that the doctors said he wouldn’t be able to do. He can communicate with us and has so many people who love him. He holds no grudges and doesn’t know what it means to be angry. Most importantly, he is still here with us; that alone holds weight over all the negatives.
As parents, we have to come to terms with the fact that he will never have a typical life, and he will experience many challenges that we have no control over. Kalel has already had more procedures than most people will in a hundred years.
“It’s difficult, but I believe that if there is something you can do about a situation, do it. And if you can’t do anything, stop worrying. We have learned to be proactive, educated ourselves, and we give Kalel the care he deserves.”
To sidetrack for a moment—another challenge many parents like us face is when planning to have more children. Our daughter Anaya was born 5 years after Kalel’s diagnosis. Anaya came along as a wonderful surprise, but as you can imagine, we were also terrified that Hunter syndrome would affect the baby. The moment we found out Monica was expecting, we made appointments with a high-risk obstetrician-gynecologist and a genetic counselor. There was a 50% chance a boy would have Hunter syndrome, so they tested the baby’s sex at 12 weeks. At that point, another test could determine the baby’s MPS status, but that test itself was risky. We were glad to know about all the testing options available but decided that we would keep the baby no matter what, so we only wanted the sex determination tests.
When the results showed we were having a baby girl, it lifted a weight off of our shoulders! Anaya could still be a carrier and pass Hunter syndrome to her children, but we’ll cross that bridge when we get there. We’ll have time to find solutions. I can only imagine what technology will look like 30 years from now.
Getting back to Kalel—with his severe disease, it is very difficult to visit people because of their reaction to his behavior. We feel more comfortable spending time around people who understand him, have more patience with him, and won’t just ignore him, push him away, or even get upset with him.
Kalel is a very loving and affectionate kid. He loves to hug and kiss his family over and over again and constantly seeks attention. We try our best to give him the attention he needs and allow him to show his affection, but when around others, we try to direct his attention towards ourselves, so that others don’t feel uncomfortable or lose their patience. Sometimes it hurts to watch others feel bothered by his bubble-bursting personality, because we know he just wants some love like anyone else does.
“Once in a while, as a stress reliever, I wait until everyone is asleep and I sneak out the house. I walk down the driveway and get in my car. I hold on tight to the steering wheel and I just SCREAM. I breathe in through my nose, out through my mouth, relax my shoulders, and close my eyes. Honestly, it’s like a bottle of soda when you first crack it open. This definitely helps me relieve some of the built-up emotions.”
It sounds like you’re defining what my wife and I like to call “collateral beauty,” like a rose growing from the concrete. Something so devastating has happened to us, yet the sun still shines through.
“A huge chunk of collateral beauty comes from the Hunter syndrome community. We are random strangers across the world, banded together by a horrifying disease that’s taken control of our children. Somehow, we are the only ones who truly understand one another.”
I cannot stress enough the importance of the National MPS Society, especially for newly diagnosed families. They have a real talent for bringing the community together and are true advocates for us all on every level.
Then there are our family and friends, who have been with us through thick and thin. They’ve been there in the fundraisers, campaigns, long hours at events, and most importantly, they opened their big hearts for my son and family.
Hunter syndrome is a horrible way to bring people together, but that’s what it has done. My 14-year-old niece also started the Making People Smile Foundation, or MPS Foundation for short. She did it in honor of her cousin Kalel.
In terms of future aspirations for Kalel, I’ve come to accept that my child will never be typical. To be frank, even I’m not a very typical person! And I’m OK with that. My only wish is to give my son the best possible quality of life and give him more years than the research suggests is possible. For other families and future diagnoses, I hope mandatory newborn screening is passed and the best treatment for our boys becomes available in time to save as many of our kiddos as possible.
My philosophy is to keep it simple and never give up on hope for a better quality of life. Your child is counting on you. No matter how bad the situation is, no matter how severe an illness gets, no matter what the Internet tells you, hold on to your hope.
