TOTS 100 - UK Parent Blogs

Saturday, 27 October 2018

Did you see me in Crowborough High Street today dressed in my wedding gown?

I'm trying to get lots of votes in the Aviva Community Fund competition to win £1000 for the Phelan-McDermid Syndrome Foundation UK. Voting is free and easy to do. Vote for PMSF UK

I was challenged that when we reached 1500 votes I would go shopping in my wedding dress and that's what I did! I wore a sign on my back saying "not a runaway bride" as I didn't want anyone to worry about me. 

PMSF UK is a charity close to my heart as my son has Phelan-McDermid Syndrome.
It's so rare that he is 1 in 4 million! PMS affects every aspect of his life. He has mobility difficulties including low-muscle tone, sleep problems, behavioural difficulties, medical needs and he is completely non-verbal. He will need additional support for the rest of his life.

The Phelan-McDermid Syndrome Foundation UK (PMSF UK) is a registered charity in the United Kingdom. PMSF UK provide a supportive and inclusive community for those who have or know someone with PMS - a rare abnormality caused by a deletion, or loss, of the terminal segment of chromosome 22. There are almost 200 individuals who are diagnosed with PMS in the UK & Ireland. All individuals with PMS have difficulty communicating; many are non-verbal and have issues around cognitive development and mobility and most have low tone in their limbs. All people diagnosed with PMS need additional care to support their daily lives.

A Family Day gives those with PMS and their families the opportunity to come together to meet other families in the same situation and share knowledge and support.

You can read more about PMS at PMSF website  and also donate to my new Virgin London Marathon fundraising page

Don't forget to vote!

Thank you so much.

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