THE family of a little boy suffering from a rare disease is appealing for help to raise vital funds to help him reach his full potential.
At just 22 months of age, Joe Searle can suffer more than 100 seizures each day. He is also visually impaired and needs to be fed through a tube into his stomach.
But he manages to smile through his difficulties, with a lot of help from his warm and loving family.
His mother, Rachel King, lives in Hindhead and is a full-time carer for Joe with help from his father, Robert Searle, and grandparents Tessa and Eric Adie.
Rachel said: ÒJoe is an amazing little boy. He has so many problems but he still manages to smile, and he keeps fighting through.Ó
With regular trips to Frimley Park Hospital and Great Ormond Street, the family is under great emotional and financial pressure, and is hoping that a visit to the Somerset-based British Institute for Brain Injured Children (BIBIC) in November will help them to help Joe as best they can.
Mrs Adie said that her grandson needed very specialist medical care because his condition was so rare.
ÒJoe has WestÕs syndrome which is a very rare condition, and although there has been some research about treatment, the consultants are still trying to find the best way to help sufferers,Ó she said.
Mrs Adie added that treatment with steroids would help Joe, but this was at the risk of delaying his development.
At BIBIC the family hopes to find out from specialists the best way to help Joe develop and reach his full potential. The family will stay at the centre in Bridgwater where it will learn how it can provide the best therapy possible for Joe.
Rachel said: ÒWe look after Joe every day, so we know him the best and at BIBIC we will get advice about how we can use our knowledge of his problems to help him. We will learn how to become JoeÕs therapists, because we are already his specialists.Ó
The family is hoping to raise funds to help with transport costs, as well as helping to buy important equipment for Joe.
ÒHe is unable to support his own weight, and he is growing heavier, which means it is getting even more difficult for us to lift him. Bath times are very tricky, and we live in a first floor flat so getting in and out of the house can be a nightmare,Ó Rachel said.
Among the events the family is planning are a fundraising assault course event where people can be sponsored to go through an army assault course at Aldershot, and special concerts with Haslemere Town Band, in which JoeÕs grandfather Eric plays baritone horn.
Rachel said: ÒWe have now accepted that Joe will not be able to lead a normal life, but we want him to be as happy and comfortable as possible.Ó
Anyone who would like to find out more about the fundraising events, take part in the assault course or support the family should contact Tessa Adie on 01428 658880.