THE devastated parents of East Lancashire youngster with a rare genetic disorder have organised a massive fundraising effort.

Terminally ill Jack Heath, four, has been diagnosed with Hunters Syndrome, which affects only one in every 150,000 boys in the country and means little Jack will probably not survive into his teens.

Locals in Jack's home town of Bacup, Rossendale, have already started a huge fundraising campaign after hearing the tragic news and have set up a charitable trust in his name.

The money is being used to buy equipment for him and to adapt his house to accommodate a wheelchair.

Phoenix Nights star Ted Robbins will be compering the fundraising night on September 26 at Bacup Leisure Hall, alongside Helen Both, winner of TV's This Is My Moment.

His mum Elizabeth has given up work to look after Jack, who has difficulty speaking, hearing and walking, and to take him to his five hospital appointments a week.

Jack, who has just started going to Holy Trinity Primary, Stacksteads, will visit the Royal Manchester Children's Hospital, Pendlebury, next week to have his adenoids and grommets in his ears removed.

His grandad Ian, 64, who lives with his wife Joan, 55, in Stacksteads, said: "He is such a bright young boy and he deserves to have the best life we can possibly give him.

"The fundraiser will raise money for both the trust and MPS, the charity that conducts research into the disease."

Little Jack stopped developing after 13 months and had to have his tonsils removed because he had sleep apnoea -- a condition that means sufferers stop breathing in their sleep.

Ian added: "He has been trying to talk and he has had hearing aids in both ears but he has an enlarged liver and spleen and loses his balance when he walks but despite all this he is the happiest child I have ever met.

"At the moment he can drag things, point and shake his head to communicate but the doctors have said he will become both emotionally and physically disabled."

Anybody wanting tickets to the event or to make a donation to the Jack charitable trust should ring 01706 213927 or 01706 874134.