This young lady in the picture most of you will know but for those of you that don't she is my youngest daughter. She amazes and inspires me on a daily basis (and drives me crackers sometimes).

There are 5 of us doing this challenge(so far) and we aim to cycle 175 miles over 4 days from the Irish sea on the west coast to the north sea on the east coast. Training has started and ointments are being applied to various sore bits already. 

My younger brother has agreed to attempt this with me which has given me extra motivation as the last bike ride we did of any significance was aged 11 when we decided it was a good idea to cycle to Dovedale. Luckily the bikes are a bit better this time so hopefully we won't be so traumatised?

The FDSS UK is an organisation close to my heart because we have met so many UK based families with the same rare condition. They help inform and educate sufferers who have a hard and scary time at the start as very little is still known and lots of mistakes in treatment can be made.