Hunter and Kingston’s Story
I have three sons. Hunter is my oldest, he’s 7 years old. He’s a livewire. From the very beginning he was sick all the time. We were in the hospital or the doctor’s office every month with high fevers because of ear infections. He had an umbilical hernia that never went away. I got pregnant with Kingston, when he was 6 months old. By that time, Hunter was just always sick.
I have three sons. Hunter is my oldest, he’s 7 years old. He’s a livewire. From the very beginning he was sick all the time. We were in the hospital or the doctor’s office every month with high ...
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Oliver and Sam (MPSII)
Oliver and Samuel are brothers and they both have MPS II Hunter disease. They have Hunter disease because their bodies are missing a special enzyme.This makes their skin cells clog up and causes stiffness of their joints and thickens up their skin and other organs as well as making it harder to breathe.
Oliver and Samuel are brothers and they both have MPS II Hunter disease. They have Hunter disease because their bodies are missing a special enzyme.This makes their skin cells clog up and causes stiff...
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Story of Annabelle With MPS IV (A)
When Annabelle’s mom noticed a small hump in her back as a baby, the family had never heard of MPS IVA. Since, they have become a pillar of the MPS community, raising money for research, leading national advocacy groups and providing support to others.
When Annabelle’s mom noticed a small hump in her back as a baby, the family had never heard of MPS IVA. Since, they have become a pillar of the MPS community, raising money for research, leading nat...
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Story of Isabel With MPS VI
After reading a magazine article about MPS VI research led by BioMarin, Isabel and her family left their life and loved ones in Guatemala in search for a new beginning. Now, Isabel has graduated from college with honors and is on a mission to make a difference in the world, advocating for others living with rare disease in the state and national capitols.
After reading a magazine article about MPS VI research led by BioMarin, Isabel and her family left their life and loved ones in Guatemala in search for a new beginning. Now, Isabel has graduated from ...
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The Brown Family – Story of Tommy
We are Joel and Lidwine Brown, and we live in Lyons, France with Tommy (born in 2011) and his little sister Stella (born in 2017). All those who know Tommy know that he is a smiling, laughing, sweet little boy, who loves his Mum and Dad and sister, is constantly asking for people to sing him songs and is always ready to boogie to his favourite music, whether it be Beethoven or the Jackson Five!
We are Joel and Lidwine Brown, and we live in Lyons, France with Tommy (born in 2011) and his little sister Stella (born in 2017). All those who know Tommy know that he is a smiling, laughing, sweet l...
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The Marino Family – Story of Danielle
We are Alissa and Chris Marino and we live in New York with our daughter Danielle, who was born in 2003. Danielle is happy and social and has a smile that lights up a room! She loves people, food, going to the mall, horseback riding, playing baseball, swimming, talking about her birthday and listening to Lady Gaga. She’s happy to be surrounded by people, and especially loves having someone talk to her about all of her favorite things.
We are Alissa and Chris Marino and we live in New York with our daughter Danielle, who was born in 2003. Danielle is happy and social and has a smile that lights up a room! She loves people, food, goi...
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The Rousse Family – Story of Austin
We are Angela and Louis Rousse, and we live in Michigan with our children Austin (born in 2012) and Emma (born in 2016). When you are around our son Austin, you are likely to be smiling. He has an amazing personality - full of fun and mischief!Austin has been a fighter from a very young age. When a cardiologist discovered that Austin was in heart failure at the age of one month, he was given medications to keep his heart beating. Through nothing short of a miracle, a very large hole in his heart healed slowly over time without requiring surgery.
We are Angela and Louis Rousse, and we live in Michigan with our children Austin (born in 2012) and Emma (born in 2016). When you are around our son Austin, you are likely to be smiling. He has an a...
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Zayd, Living With Hunter Syndrome
Zayd is a funny, smart, and talented 23-year-old. He practices tai chi and plays the trombone. He is also an amazing public speaker and an even better friend, brother, and son. Zayd, who lives with Hunter syndrome, is also currently pursuing a PhD. Even though he’s young, he’s learned a lot of lessons—many of them outside the classroom.
Zayd is a funny, smart, and talented 23-year-old. He practices tai chi and plays the trombone. He is also an amazing public speaker and an even better friend, brother, and son. Zayd, who lives with Hu...
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Trusted Resources: Community Center
Online groups, photo galleries, and blogs
I Want to Live in the Moment While There’s Still Time
Raising an Adult Child With Sanfilippo Syndrome Is Tiring
MPS 1: Where Are We Now
Hunter and Kingston’s Story
Oliver and Sam (MPSII)
Story of Annabelle With MPS IV (A)
Story of Isabel With MPS VI
The Brown Family – Story of Tommy
The Marino Family – Story of Danielle
The Rousse Family – Story of Austin
Zayd, Living With Hunter Syndrome
Canadian MPS Society – LinkedIn
Sanfilippo Children’s Foundation – LinkedIn
Canadian MPS Society – Twitter
Cure Sanfilippo Foundation – Twitter
National MPS Society – Twitter
Sanfilippo Children’s Foundation – Twitter
Canadian MPS Society – Facebook
Cure Mucolipidosis – Facebook
Cure Sanfilippo Foundation – Facebook
ML4 Foundation (Mucolipidosis Type IV) – Facebook
National MPS Society – Facebook
Sanfilippo Children’s Foundation – Facebook
Canadian MPS Society – Instagram
Cure Mucolipidosis – Instagram
Cure Sanfilippo Foundation – Instagram
National MPS Society – Instagram
Sanfilippo Children’s Foundation – Instagram
Emily Wants to Show Other Caregivers the Importance of Taking Care of Yourself
A Guide to Understanding MPS I
A Guide to Understanding MPS II
A Guide to Understanding MPS III
A Guide to Understanding MPS IV
A Guide to Understanding MPS VI
MPS and Other Similar Lysosomal Diseases
Advocacy for MPS and ML
Fatal Care Research Foundation
Morquio B.Com
The International Advocate for Glycoprotein Storage Diseases
Extraordinary Experiences Program
Family Assistance Program
Journey Assistance Program
Medical Travel Assistance Program (MTAP)
RARE Scholars: Empowering Students Living With Rare Disease