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Organ Donation – A Family’s Perspective

Facing the prospect of a major organ transplant is a big enough ordeal in itself. Knowing that the organ was donated from a person who died creates a whole new host of challenges to overcome.… 

Sarah Laing on ITV television

Twenty year-old Sarah Laing has Cystinosis. Her story and the research being undertaken at Sunderland University, not far from where Sarah lives, are told on a short ITV television broadcast. To see the full video,… 

Morven’s Story In The News

Morven, daughter of Alex and Neil Hutchison, was diagnosed with Cystinosis at 9 months old. Since the diagnosis the family, who live in West Linton, south of Edinburgh, have been very keen to support the… 

The Forsyth Story On Television

Lena Forsyth was diagnosed with Cystinosis at 7 months old, changing the life of the Forsyth family of Mintlaw, near Peterhead, forever. However, the whole family rose to the challenge of dealing with Cystinosis and… 

TV Interview Of Family Dealing With Cystinosis

Trevor Strauss’s 23-month-old daughter, Gabby, has Cystinosis and he is the founder of Canadian based charity CARE – Cystinosis Awareness Research. Trevor was recently interviewed for Canadian Rock 107’s Morning Show. You can view the… 

Teaching A Child With Cystinosis

Mrs Dale, Ridgeway School, Derby (www.ridgewayprimary.com) When I was first told that I was going to have a child with Cystinosis in my class, I have to admit I was clueless. It was a condition… 

Living With Cystinosis – Our Story So Far

In 2001 Vicky and Roy Forsyth’s 7-month-old daughter suddenly fell ill as they were moving house. What was initially thought to be a bug, persisted and was eventually diagnosed as Cystinosis, turning their world upside…