THE parents of a toddler suffering from a rare disease have vowed to set up a support group to help other families after they found it almost impossible to find out information about what was affecting their daughter.

Helen and Gary Cumberland, of Quebec Road, Blackburn, found it almost impossible to get advice and help to look after their daughter Alexandria, three, who was diagnosed with Croffin Siris Syndrome in October last year.

Now, thanks to the internet and contacts in America, they are learning more about the disease and want to develop a self-help group so that other newly-diagnosed families do not come up against the same brick walls as they did.

Croffin Siris Syndrome is extremely rare and affects girls more than boys.

Children suffer various levels of mental retardation and have distinct physical characteristics which are associated only with this disease.

One of the earliest symptoms to be noticed is missing nails on the little finger and toes.

Mrs Cumberland, of Quebec Road, Lammack, said: "We have been told there are only a handful of Croffin Siris cases in England.

"Alex was diagnosed by genetics experts from Manchester who saw her at Queen's Park Hospital but since then everything we have learned very little about the disease from local doctors. "In the 10 months since Alex was diagnosed, we have been scouring the internet and have been in touch with families in America where they seem more aware of the syndrome.

"In the US they have groups to help families and Gary and I are hoping that we can set something like that up here in England.

"We know of two other Croffin Siris children in the North West and we are going to try to enlist their help.

"It is always good to talk to someone who is going through the same problems as yourself and that is particularly relevant when a family first finds out that a child has the disease." The Cumberlands are also trying to raise funds to attend a special conference in Croffin Siris Syndrome which is due to be held in America in 2001.

Mrs Cumberland added: "We struggled to cope when we first found out about Alex and we had nobody to turn to. We want to make sure that other families have someone they can call on for help and support."

More information about the disease can be obtained from Mrs Cumblerland on 01254 727101 and she would also like to hear from anyone who can help with fund raising.