This is the first time I’ve really set out to raise a significant amount of money for a charity and for me this is very personal, as I’m raising money for a small little-known charity called Phelan McDermid Syndrome. They support people with the same condition as my gorgeous daughter Frankie.

My challenge is to run my first ever marathon with my amazing friend Marianne (who’s also raising money for PMSF UK).  The race is in Milton Keynes in only a few months’ time.

My aim is to raise a massive £2,213. I've chosen this number as it symbolises where the deletion is in the chromosome and is a number etched in the memories of all parents of those who suffer the condition.

Phelan-McDermid syndrome is a rare genetic disorder. There are only about 2000 registered cases worldwide and our gorgeous daughter is one of them. Frankie is non verbal and has developmental delay.  She also has low muscle tone in her arms and legs making it hard and tiring to walk, move around and do everyday activities including feeding herself.

She's a total joy to be around and has taught us so much as parents. We celebrate every achievement to the max, no matter how small. Her strength and determination amazes us and we are such proud parents.

Thank you so much for your support, it's truly appreciated xxxx

We're raising awareness of #PhelanMcDermidSyndrome #PMSF #PMSFUK #PhelanLucky pmsf.org.uk 22q13.org