Unlike some of my other fundraisers for causes I’ve done through half marathons and marathons, though important and extremely worthwhile to raise money for, this one is even more so because it affects the health and wellbeing of one particular little girl - Tiger Lily.

Tiger is the daughter of a very very  old school friend Ricky and his wife Vicky and has a very rare condition that only affects around 1 in 6 million people. It’s called Congenital Central Hypoventilation Syndrome  or CCHS. It means that whilst asleep or under moments of stress or even extreme  concentration she can suddenly just stop breathing.

Tiger has to be attached to a ventilator every time she goes to sleep and is under a nurses supervision at night in case anything happens and if this care is unavailable one night her mum and dad have to take shifts in order to keep an eye.

This also means that trips away as a family are difficult in case Tiger falls asleep on a journey and travelling abroad even harder.

The money raised will go to a charity called Keep Me Breathing which has been set up by another family living with CCHS in order to provide funding for research to make this condition far more manageable. The technology is there  but because it’s such a rare condition, the money is not.

Any sponsorship will be most gratefully received  to help this superb charity and to also to help get Tiger a better quality of life.