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.

Gaucher disease


  • 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 – This is a YouTube video about Taryn Murphy from Baltimore, Maryland USA


  • 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

Sanfillipo Disease

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.

Morquio Disease

  • 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)

  • Craig Oliver – from Stratford, New Zealand. Craig has never let MPS 6 interfere in his life. Craig tell his story about how he has endeavoured to lead a very normal life.
  • Stephanie Standish – from Wellington, New Zealand. Stephanie tells her own story as an adult living with Maroteaux-Lamy (MPS 6).

Hunter Disease

  • Jack Peacock – from Palmerston North a four-year old warrior.
  • James Marquardt – from Christchurch – follow James as he goes through bone marrow transplant.

Krabbe Disease

Pompe Disease

  • New Zealand Pompe Network – Here’s a site operated by adult patients with Late onset Pompe Disease. LDNZ has provided considerable support in lobbying for ERT. We have also provided assistance for patients to attend international meetings on Pompe Disease.

Fabry Disease