Myself and husband Ben along with friends, Penny, Jack and Alex are walking the Ultra 100k continuous, in the hope of raising much needed funds and awareness for PMSF UK.

Phelan Mcdermid syndrome (PMS) is a rare genetic disorder involving chromosome 22. This can effect critical functions in a persons body.

A genetic difference in your 22nd Chromosome affects brain development and functioning, which results in physical and intellectual disabilities. Some people never gain essential skills while others gain them and then lose them through regression and most require life long care and medical attention.

Our Daughter Bree was diagnosed with this disorder just last year and is currently only 1 of around 3500 people diagnosed world wide.

Although it is a relief to get a diagnosis it is also heartbreaking to know that your daughters life expectancy is unknown, that she will not grow up to be independent and live a full life of all the hopes and dreams that we want for our kids. We still have hopes and Dreams for Bree but they look very different to her siblings. We pray that one day Bree will be able to tell us about her day, that she will use the toilet, dress herself, understand dangers of crossing the road and that not everyone is a nice person. We pray that our daughter lives the fullest life that she can and she gains enough essential life skills that she will be ok if Ben and I are not here to take care of her, but most of all we pray for a cure, that through the magic of medicine our daughter will against all odds lead a normal life or something very close.

That is why Ben and I are doing this walk, to keep the hope alive for us and 3500 other families around the world, that one day we will find our cure. Anyone who knows our Bree knows that she is an absolute delight, she's happy and loving, adores music and being outdoors, she is so incredibly special and she deserves to know that her parents and siblings will do anything for her and we will never give up.

Thanks for taking the time to read this and please donate if you can,

Thanks Ben and Nat