Hello, my name is Sophie-May, I’m 10 years old, I’m from Crewkerne near Yeovil, and I’ve just been selected to go on the holiday of a lifetime to Florida! 

I was diagnosed with Pontocerebellar hypoplasia type 6 (PCH6) when I was just 5 years old. This is a rare condition that is characterised by the progressive degeneration of various parts of the brain. The condition also means that I have spastic quadriplegia and epilepsy.

I have already defied medical odds, as most children who have PCH6 do not live past infancy and I’m currently the oldest child in the World to have the condition!

Right now I am over the moon at the news that, I have been selected to go on the annual Destination Dreams trip to Florida! And the great news is that my family get to come along as well! 

Destination Dreams is an annual 7-day holiday to Florida, organised by Caudwell Children. 25 children with life-limiting conditions spend time with their favourite Disney characters, play in the water parks, eat great food, enjoy live entertainment and see the sights - and the great thing is that the whole family get to come too! Plus, we are fully supported for the duration of the holiday by a dedicated team of Paediatric Doctors and Paramedics. The trip doesn’t come cheap, and it costs the charity around £10,000 to send each family.

My Dad, Mark, knows Destination Dreams will be brilliant for all of us, including my 5-year-old sister, Molly ‘The 2 girls rarely get the opportunity to do things together as Sophie May is either in hospital, at appointments, or in her wheelchair. So this holiday will be the perfect opportunity to make lots of positive, happy memories together.’’

And my Mum, Kelly, is keen to help Caudwell Children keep fundraising for Destination Dreams, ‘’Without the charity’s support it simply wouldn’t be possible for us to have this kind of holiday. Throughout it all, Sophie-May’s medical needs will be catered for, which will be a huge relief.’’

To date, over 180 families have enjoyed the getaway, but we need to keep raising funds to make sure more children like me get to go in the fuure. You can donate to me appeal here, or by texting: DEST80 £amount 70070.

Thank you,

Sophie-May

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