UP until the age of eight months Hannah Wood was a perfectly normal baby girl.
Then, inexplicably, her behaviour began to change and her development regress.
Mum Gerry, from Headlands Grove, Upper Stratton, explained: "She was quite a placid baby, she started trying to roll and do normal baby things but by eight months we started to realise something was wrong.
"She made some progress at the age of 20 months my daughter could pick up a cup and drink for herself but six months later that was totally impossible for her."
Hannah suffered from the rare neurological condition Rett Syndrome.
It affects just one in 20,000 babies, nearly always girls.
Although they initially develop normally from about a year onwards, they regress ending up with profound mental and physical disabilities.
Hannah lived to six years old, needing full-time care from her mother. She died suddenly after contracting pneumonia, a condition brought on by Rett Syndrome.
This July will be the fifth anniversary of Hannah's death and as a memorial her dad Phil, 40, has launched a fund-raising bid in her memory.
On May 26 the Honda worker plans to plunge 300-feet off Clifton sea wall in Bristol on a zip slide a kind of pulley on a cord which Phil will hang from as he flies across Clif ton Gorge.
All the money raised will go towards the Rett Syndrome Association UK, a group founded to provide advice and support for families affected by the disease and to fund research.
Gerry is a trustee for the charity and previously worked for it as a bereavement counsellor.
She said: "When Hannah died my husband and I took different paths, he didn't want to get involved because he found it too painful so this fundraising event is quite a step forward for him.
"I had to find another role in life after being a 24-hour a day carer. Working for the charity is my way of making use of the years that we had with Hannah."
Phil said: "The Rett Association came up with the idea of doing a zip slide. My wife was talking about doing it but she's not brilliant with heights so I thought I'd do it."
Anyone interested in supporting Phil's plunge later this month should can contact him on 642089.
Or send a cheque made out for the Rett Association UK to 72 Headlands Grove, Swindon, SN2 7HP.
To contact the Rett Syndrome Association, call 020 8361 5161. Or e-mail info@rettsyndrome.org.uk.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereComments are closed on this article