PARENTS who see the agonising, progressive effects of a rare illness on their two-year-old daughter with every day that passes are on a desperate mission to raise funds towards a cure.
Little Lily Hall was diagnosed with Rett syndrome, a debilitating and currently incurable condition which almost exclusively affects girls, on December 16.
It has affected her communication and she has lost the use of her hands.
Lily developed normally up until about 13 months, when parents Kerry and Colin noticed something wasn't right.
"It took about a year but finally the tests came back as Rett syndrome," said Mrs Hall, 30, of Taynton Drive, Merstham.
"We hadn't heard of Rett syndrome initially but we were told it was a possibility. It was the one thing we had feared the most, the diagnosis hit us very hard.
"Day to day is quite frustrating for Lily. She has no way of communicating with us now. She gets really frustrated, she can't tell us when she is hungry or thirsty; she has lost the use of her hands, so if she has an itch she can't scratch it. Eventually she will lose all peripheral movements and she won't be able to walk. It is an awful thing to have.
"It is looking quite bleak because it is a progressive syndrome. Today is the best day she will ever have. Each day that goes by it takes something else from her, very slowly.
"She has occupational and physiotherapy but it's going to happen. She is a very happy, loving little girl, she is still very much with us.
"But that is the sad thing. It is almost like grieving for a child who is here.
"The child I had at 13 months who could hold a biscuit and feed herself, who would interact with me, do little things, like, if I roared like a lion she would roar back; she can't do those things now. It is knowing she is going to keep changing every day."
Laboratory tests have indicated that Rett syndrome may be reversible, and now the family is on a huge drive to raise money for more research. They have already raised thousands of pounds, including a £940 donation from a total stranger.
"Lily has just started taking her first steps which is great. It's great she got to experience walking, even if it is not forever," said Mrs Hall.
"She is doing so well, she's very brave. She has lots of hospital appointments and takes it all in her stride.
"A cure is within reach. It is not a lost cause. It's possible, we just need to raise as much money as possible."
Family and friends are taking on sponsored walks of distances between 20km and 60km in May. To donate, go to justgiving.com/teamlilypad
