Patient Stories

Haley’s story

In this video, Haley is 9 months old. Her parents learned a month ago that Haley has a severe form of MPS I (historically known as Hurler syndrome). Watch Haley’s story to learn how Haley was diagnosed, how her parents are coping, and their plans for Haley’s future treatment.

Bryce’s story

In this clip, Bryce has just turned 6. Two years ago, he was diagnosed with an attenuated form of MPS I. Watch Bryce’s story to see how Bryce and his parents are coping with the diagnosis, the experience Bryce has had with treatment, and how the whole family works together to support each other.

Alicia’s story

This is a clip of Alicia at 16-years-old with MPS I. She has known about her diagnosis of MPS I for nearly 10 years now. She has an attenuated form of MPS I. Watch Alicia’s story for interviews with Alicia and her mother on how she was diagnosed, what life with MPS I is like for Alicia and her family, and how she dealt successfully with being bullied in school by educating her peers.

Denise’s story

In this piece, Denise is a 40-year-old woman with MPS I. She was first diagnosed at the age of 10, but it wasn’t until her early 30s that she began to experience many of the symptoms that she is living with today.

Credit: All video courtesy of GeneticaLens.