Rare Disease Day - 28th February 2015

Didier’s visit to the UK

DidierWe are extremely excited to announce that a very special little boy is coming to visit us here in the UK! On the 6th July, Didier and his mum are travelling to the UK and spending a week in London.

Didier became a very much-loved little boy across the UK, after the documentary ‘Turtle Boy’ was aired on Channel 4 in 2011. The documentary focused on Didier’s life and how he lives with his large Congenital Melanocytic Naevus. Caring Matters Now and Dr Kinsler were also featured in the documentary, along with some of our children who attended the Liverpool Support Day, where part of the documentary was filmed. The documentary was very well received in the UK, and the profile of Caring Matters Now grew. In fact, on the night the ‘Turtle Boy’ documentary was aired, the Caring Matters Now website had over 2000 hits!

Since the ‘Turtle Boy’ documentary was aired, Caring Matters Now has kept in close contact with Didier and his mum Luz. We have been keen to support Didier and to keep up to date with his medical progress.

DidierAmazingly, we now have the opportunity to support Didier and his mum in travelling to the UK. Didier and his mum have never left their home country in South America, so this trip is a once in a lifetime experience. Caring Matters Now are helping to host Didier and his mum whilst they are in the UK. We have arranged for Didier to meet other children with CMN Syndrome for the very first time as well as visiting Dr Kinsler and Dr Bulstrode at Great Ormond Street Hospital.

This is a wonderful opportunity for Didier and his mum. They are both looking forward to visiting London and experiencing our culture.

Excitingly, on Thursday 10th July, Caring Matters Now will be featured on national television with Didier and his mum. This will help to raise awareness of CMN Syndrome and our charity.

Caring Matters Now have opened up a fundraising page, which 50% of all donations will go directly to supporting Didier and his mum. The further 50% of all donations will go towards the work of Caring Matters Now. If you would like to give please go to www.justgiving.com/didiervisit.

To keep up to date with Didier’s trip, please follow us on Facebook and Twitter.

Click here to read about Didiers vist to the UK and see his appearance on Sky News.

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