A HAMPSHIRE family is celebrating having raised enough money for their a special bicycle, so that their daughter, who has a rare genetic condition, can enjoy quality time with her sister.

Ella Child has Rett Syndrome. The genetic mutation is present in one in 10,000 to15,000 girls – boys with the condition are usually miscarried.

Children develop normally up to a point and then begin losing their skills.

Ella, from Shirrell Heath, near Wickham, was two-and-a-half when she was diagnosed.

Now aged ten, she has a mental age of around 12 months.

Ella, along with her twin sister Jess was born seven weeks early.

Although the girls were slow to develop, initially there was no real cause for concern.

They were very late to sit up unaided, both 13 months. As time progressed Jess began to crawl and Ella developed a 'bunny hop'.

While Jess quickly progressed to walking, by 18 months Ella showed no signs of taking her first steps. In fact she was 25 months when she first began to walk,with a very wide-base ataxic gait.

Ella also developed tremors. Her hands and arms would shake for no apparent reason.

During this time Jess was learning many words and while slower, Ella began to talk and had 12 words, including Mummy,Daddy, crocodile, properly and broccoli!

However, at around 24 months Ella stopped talking, and has not spoken another word since.

The family's paediatrician thought Ella might have autism, but a chance mention of Rett Syndrome by a private occupational therapist sent Ella's parents to the internet.

The were left in no doubt, having read the symptoms which included hand wringing, loss of speech, difficulty with balance and walking. A blood test later confirmed their suspicions.

"It’s a hideous syndrome striking little girls at about 18 months,” said Ella's mother, Nik.

“You feel you have a healthy happy child and then over a few dramatic months everything changes. It is something that happens to other people, but on February 10, 2010 it happened to us.”

Nik remembers fondly watching her little girls playing together and learning to speak.

“I remember Ella saying ‘broccoli’ and ‘crocodile’ while I was pushing her on the swing,” she says.

Ella now attends Shepherds Down School and is in year 6. She is still able to walk which is an achievement for girls with Rett Syndrome.

She cannot talk and communicates as a baby would. She enjoys music and television and likes to go out and about.

This was the reason that the family began fundraising for Ella’s bicycle.

Since Ella's diagnosis, her family and their friends have raised a massive £19,266.00, all going towards Rett Research via Ella’s just giving page: www.justgiving/friendsofella.co.uk.

The family felt that it was now time to raise money for something that Ella would directly benefit from.

"There are few active things we can do as a family and as her twin sister Jess likes to cycle it was the obvious choice," said Nik.

" Ella loves the feeling of the wind on her face so we set about finding a bicycle for her.

"We held a large quiz at Swanmore Village Hall in September with all our family and friends who gave very generously and we raised a considerable sum, however, the bicycle was very expensive and three wonderful charities came to the rescue and helped us meet our target.

"These are The Meon Valley Lions, The Rotary Club and The Pinder Trust. We Would like to express huge thanks to them for all their work raising money for Ella’s bicycle."

What is Rett Syndrome?

Children appear to develop typically before a slowing of development, loss of purposeful use of the hands, slowed brain and head growth, problems with walking, seizures, and intellectual disability.

For more information and support visit Rett Syndrome Research Trust UK - www.reverserett.org.uk, or Rett UK – www.rettuk.org.