Video: Thea’s fight against a rare genetic disorder

24 June 2014

Samantha and Richard Paterson formed Thea’s Trust after their youngest daughter, Thea, was diagnosed with MPS I Hurler
Syndrome.

MPS I is a rare genetic disorder affecting around 1 in 100,000 children.

Thea was born on 23 July 2013 and sadly died on 10 May 2014. During her short time, she received treatment at Manchester’s Children Hospital, including radical stem cell therapy. For the treatment, her immune system was suppressed and unfortunately she passed away due to breathing problems after contracting flu.

Samantha and Richard, from Harrogate but now living in Ilkley, are working to raise awareness as well as vital funds to help support other families with children diagnosed with the condition.

We were lucky to spend time with Richard and record a video telling Thea’s story and find out how the charity is doing.

Note: two edits have been put together, a full and shorter edit. The video’s can also be viewed full-screen from youtube.

www.theastrust.co.uk

www.mpssociety.org.uk

 

Long Video

Short Video

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