Welcome to My Life With Hunter Syndrome, a place where you can read stories from people living with this condition. Get inspired, be moved, and come back often for more.
Keep in mind that Hunter syndrome affects everyone differently. These stories do not reflect all the possible experiences that someone may have with this condition. Also remember that your healthcare team will always be your best source of information.
Raising a Family When One Child Is Living With a Rare Disease
13 min read/19 minute listen
Parents Avram and Monica share their experience of raising a family when one child is living with a rare disease.READ MORE
MORE FROM AVRAM
Practicing Self-care as Caregivers
5 min read
Caring for their son, Kalel, is Avram and Monica’s priority, but they have also learned the importance of taking care of themselves along the way.
When Avram’s son was diagnosed with Hunter syndrome, advocacy was the last thing on his mind. Little did he know that it would turn into his passion.
Preparing for a Big Move: An Insider’s Guide
7 min read
Avram and his wife Monica had to make a tough decision to move across the country to find better care for their son, Kalel. Through it all one thing was clear: family is everything.
A Parent’s Perspective on the Challenges—and Joys—of Caring for Someone With Hunter Syndrome
15 min read/25 min listen
Avram shares how he and his family have come together to help their son Kalel manage life with Hunter syndrome.
Tips on How to Communicate With Your Healthcare Team
6 min read
Knowing how to voice your or your child’s needs can help everyone on your healthcare team work better, together. Find tips on how to work well as a team.READ MORE
How We Helped Justin Adjust to Virtual Learning
8 min read
Kimberly and Steven found ways to help Justin get the most out of virtual learning. Learn how they navigated challenges and adapted.READ THEIR STORY
MORE FROM KIMBERLY & STEVEN
Cooking With Our Son
4 min read
For Kimberly and Steven, preparing meals with their son Justin is a family affair filled with laughter, fun, and learning. Find out how this brings him joy and more.
Kimberly and Steven faced many challenges after getting their son’s diagnosis. Little did Steven know he would find comfort while navigating one of them.
Advocating With Kindness
4 min read
Kimberly and Steven have discovered that being collaborative and flexible goes a long way when advocating for their son.
Academics vs Social: The Path We Chose
2 min read
Kimberly and Steven faced a big dilemma in their son’s early school years. Learn how they arrived at their decision.
How We Helped Justin Belong
9 min read
Kimberly and Steven are devoted parents of a teenage son living with Hunter syndrome. Through the years they’ve been resourceful, kind, and above all, loving.
Connected, Not Isolated
9 min read
When Zayd started middle school, Hunter syndrome made making friends a challenge. But he developed strategies to cope—and found a new passion along the way.READ ZAYD’S STORY
MORE FROM ZAYD
Redefining My Limits
4 min read
Zayd thought of himself and his body in a very limited way until he discovered tai chi. Find out what changed his mind.
Living Up to My Goals
3 min read
Zayd’s struggles when he started college set him on a path of self-discovery and purpose. Find out how he overcame them.
More inspiration IS on the way
Visit us often to find new resources and stories we hope you’ll find useful and inspiring.
Give us feedback