On this page we provide stories written by families affected by lysosomal disorders, plus links to websites prepared by families themselves. Please contact us if you would like to add your story or a link to your site.

Type 2 Gaucher disease

Brannon Alexander Gregory - from Woollongong, Australia. The story of his brief life affected by Type 2 Gaucher disease, told by his parents Martin and Kylie Gregory. This site also contains good information and links about Type 2 Gaucher.

Mannosidosis

Timothy and Hollie Forman - from Lower Hutt City, New Zealand, born 14th November 1974. The twins' story and how they have dealt with the challenges Mannosidosis has presented to them.

Taryn Murphy - all about Taryn Murphy from Baltimore, Maryland. Taryn is a teenager who has her own webpage designed especially for young people wanting information about Mannosidosis.

Mucolipidosis

Sarah and Hayden Noble - from Nelson, New Zealand. Their inspirational story includes a remarkable outcome from an experimental treatment, told by their mum, Jenny Noble.

Niemann-Pick Disease

Jacob Quinn DeMeis-Dullea - from Connecticut USA. Featuring Jacob's life with Niemann-Pick Type C, as told by his mum and dad. They are also promoting research through fund-raising efforts.

Batten Disease

Michelle Kay - A tribute by Sharon Kay, from Auckland, New Zealand, to her daughter Michelle who died from Batten Disease, at 5 years of age.

Sanfillipo Disease

Robbie Brown - story and photo gallery of Robbie, a young man from Australia with Type A Sanfillipo.

Kirby Wilson - from Illinois, USA, affected by Type B Sanfillipo. Kirby's progress is detailed on their Newsletters page, and the site also contains details of some amazing fundraising efforts by her parents, Brad and Sue Wilson.

Sandhoff Disease

Gemma Lea - A tribute by Clare Lea, from Cheshire, England, to her daughter Gemma, who died of Sandhoff disease in May 2001, aged 2 years.

Tay-Sachs Disease

DJ's Homepage - This site, set up by Akari Yamada and Davis Yang, from Chicago, USA, tells the story of their son Davis Junior, who is affected by Tay-Sachs disease.

Hurler Disease

Jenna Marie's Page - The story of Jenna Marie Richbourg, a young girl from Fort Worth, Texas, with Hurler Disease (MPS Type I). The story is told by her mother Sherri Richbourg, and includes details of Jenna Marie's Bone Marrow Transplant.

Morquio Disease

Shawn Brush - This link brings you to Canadian Shawn's site about his music and his experience with Morquio.

Rachel's Story - Rachel, of New Zealand, tells her family story of firstly getting a diagnosis of MPS 4 Morquio Disease and outlines her frustrations of being fobbed off when trying to find out what was wrong with Oliver. This is a story of a families fight to get all the right answers so that they are better able to care for Oliver.

Maroteaux-Lamy (MPS 6)

Stephanie Standish - from Wellington, New Zealand. Stephanie tells her own story as an adult living with Maroteaux-Lamy (MPS 6).

Hunter Disease

Jack Peacock – a four-year old warrior.

Krabbe's Disease

Krabbe's Kids – the stories of children with Krabbe's disease.