HUNTER SYNDROME RESOURCES GET INSPIRED AND GET PRACTICAL

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.

Tagged in: Caregiver, parenthood, relationships, family


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.

Tagged in: Caregiver, self-care, communication, relationships


Everything in Its Place—The Benefits of Life Well‑Organized

9 min read

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.

Tagged in: Parenthood, Caregiver, Medical information, Staying organized


working on laptop

How We Helped Justin Adjust to Virtual Learning

8 min read

During the pandemic, Justin had to transition to remote school. Kimberly and Steven share their 5 tips on how they prepared for in-person or remote learning.

Tagged in: Parenthood, Caregiver, School, Virtual learning, Listening


Boys playing trombone and clarinet in a band

Connected, Not Isolated

9 min read

Zayd has learned many lessons along his journey, and he’s sharing them with us today. Take a look at 5 practical tips inspired by his experience. We hope you find them useful!

Tagged in: Vulnerability, Self-discovery, Community & relationships, Problem solving


How We Helped Justin Belong

9 min read

Kimberly and Steven share the wisdom they’ve gained while building a supportive community for their son living with Hunter syndrome. Take a look at 5 practical tips inspired by their experience.

Tagged in: Community & relationships, Parenthood, Problem solving, Caregiver

More inspiration IS on the way

Visit us often to find new resources and stories we hope you’ll find useful and inspiring.

Open survey