Rett Syndrome sufferer Ella Czornyj is facing life in a wheelchair, but her family are determined to raise funds for pioneering treatment. Sian Davies reports...

LIKE all young grandchildren Ella Czornyj is the centre of attention in her family. The pretty blue-eyed toddler gurgles and smiles like any other two-year-old but that is where the similarity ends as Ella has been diagnosed with a disabling neurological disease.

The condition known as Rett Syndrome means Ella cannot sit or stand and may never be able to walk, talk or even feed herself as she has no control over movement in her arms and legs.

Hearing that she could be wheelchair bound for the rest of her life was devastating blow to Ella's family but, far from letting the news depress them, they have pulled out all the stops in a fundraising effort to get pioneering treatment.

It was only by chance that her grandmother Shirley Holland, was watching a regional news programme when she saw a report on the disease and how it could be treated.

"We were still coming to terms with the diagnosis at the time but I saw the programme and contacted Ella's mother Helene straight away," she says.

"We found out that the treatment is available at a centre in West Sussex but that the cost was in excess of £10,000, so we immediately started trying to raise the money."

The treatment Ella needs involves injecting amino acid into her system along with intense mobility and physiotherapy to treat the syndrome that affects one in every 10,000 children.

But the intensive programme is an expensive one, so a massive musical fundraising effort has been launched by her family that involves nearly every one of Ella's cousins, aunties, and siblings.

So far £1,500 has been raised by a sponsored musical marathon where friends and family played instruments for as long as possible. A musical dance and drama concert is also planned for the summer as are a number of other sponsored events.

Mrs Holland of Catisfield Road, Fareham, said: "We have a background in the arts as a family, Helene used to perform on stage and screen so it seemed the natural way to raise money for the fund."

Helene Czorny, who now lives in Marlow, Wiltshire, says: "We have been amazed at the response we have got from everyone who knows Ella and using music is such a good way of doing it as it is something that Ella responds well to.

"The treatment has been the first light at the end of a dark tunnel for me and my husband since Ella was diagnosed eight months ago, so all the money raised is vital to her continuing with it."

Mrs Holland who runs a drama, dance and music group along with another of her daughter's, already has students in training for the concert on July 6 and 7 at the Henry Cort Theatre, she says:

"It is sure to be fantastic evening especially when it is all in aid of such an adorable, special little girl."