Family Stories

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.

Visit Our Care Pages

Care pages are personal websites that can help families communicate with friends and loved ones during times of illness and injury. They are a place where a family can place messages and news in a journal and share photos, and where friends and family can provide support and advice by placing messages

We have three families with care pages (for four children). Please visit the pages to share in their stories.

Gaucher disease

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

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.

Media Interviews done by the Nobles

  • Sarah's Art Tauranga parents, Jenny and Paul Noble, are having to overcome some large obstacles while they raise their family. It's not just because they've had to get through the teenage years, but because two of their teenagers were diagnosed as being the only people in New Zealand to suffer from a rare lysosomal disease. It's called mucolipidosis.
  • Noble's update – Jenny Noble and Dr Sara Cathey Jenny Noble is a Mother on a mission to find out what most medical professionals have been unable to tell her - how to help two of her children, who have one of the worlds rarest disease.

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

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

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.

Media Interview

  • An infusion of hope – Rachel talks about the improvements seen in Oliver since he started a clinical trial for Morquio syndrome

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