Family Voices
Nicholas (11 years old) and DiAngelo
(7 years old)
Nicholas (Nick) and DiAngelo are brothers who both have Hunter syndrome. At the age when most kids are gearing up for kindergarten, both boys were diagnosed with the disease. The family lived in a small town in New Mexico when the kids were younger, and they had to go to several doctors before they got a diagnosis. Due to the rarity of Hunter syndrome, it was difficult to find a physician who could manage Nick's Hunter syndrome. Eighteen months ago, Nick, DiAngelo and their family moved to California to be closer to the boys' physician.
Both Nick and DiAngelo enjoy attending school and are looking forward to starting summer school in June. Nick is in fourth grade and is a Cub Scout member. Besides school and Cub Scout activities, he likes to work on puzzles. According to his mom, Annette, Nick is a good organizer and is a big help at home to his mom and older sister. Even at the hospitals, he is well-known for helping to keep the library neat by arranging the books! DiAngelo is in first grade and like his older brother, is also a Cub Scout member. He loves animals and one of his favorite things to do is to watch the Animal Planet channel on television. Like a typical 7-year-old, DiAngelo's favorite toys are cars and trucks.
Bryce - Age 11
In November 2000, Bryce, then 4 years old, was diagnosed with Hunter syndrome, but it was not a trip to the doctor that initially alerted Bryce's parents that something might be wrong.
It was when a gymnastics instructor told them that their son could not participate in tumbling class due to his limited range of motion that they realized Bryce could be experiencing something more than normal developmental issues.
Bryce's family went to their physician for guidance, but their pediatrician did not know what was wrong. After 6 months of seeing several physicians, Bryce finally landed at UCLA, where a team headed up by Elizabeth Neufeld, PhD, diagnosed Bryce with Hunter syndrome (MPS II).
Bryce is a very creative 11 year old with a passion for drawing cartoons. His comic strip is called “32nd Street” and the characters include himself, his friends, and a stuffed bear that comes to life named Mike. Bryce is involved in martial arts and is in the gifted and talented education program at school. He has lots of things going for him and a very positive attitude about the future.
Sammy - Age 10
Sammy's favorite things are riding the bus to school, playing with his friends, telling jokes, and going on vacations with his family. But it wasn't always so.
As a baby, he suffered severe respiratory conditions and painful chronic ear infections. His parents have since learned that these are among the early symptoms of Hunter syndrome. When he was 2, he received his diagnosis. In the years that followed he had his tonsils and adenoids removed, underwent aortic valve replacement, and was frequently hospitalized for other kinds of treatment. From the day Sammy was diagnosed, his parents have been committed to learning, networking with other parents through the National MPS Society, and maintaining the best possible care and quality of life for their son.
"Today we have an opportunity to increase public awareness and tell families that there's hope out there,” says Sammy's mom Vangie. “We have to talk about it. Even though Hunter syndrome is a rare disease, if parents know the signs and symptoms and what to look for, they can be more informed and know where to get resources and treatment."
If you'd like to share your story, please email us at webmaster@hunterpatients.com. We may contact you for more information after we receive your submission.