Father aims to raise 100k for son Jakes treatment in the US
“WE just want to give him his life back.”
That is the heartbreaking message from a Newbury father who is trying to raise £100,000 so his nine-year-old son can have a “life-changing” operation at a specialist clinic in the US.
Dudley Spencer, 45, of The Gabriels, is organising a series of events to raise money so that Jake, who suffers from complex partial epilepsy in the right hand side of his brain, can have the pioneering operation in Cleveland, Ohio.
Jake, who turns 10 this year, was first diagnosed with the condition when he was two years old.
However, two years ago, just before his seventh birthday, when his condition started to rapidly deteriorate, with Jake experiencing up to 200 seizures a day.
He has since had four seven-hour operations to remove the affected area and on three occasions has been put into an induced coma to enable his brain to rest.
Speaking to the Newbury WeeklyNews this week, Mr Spencer said: “It is absolutely heartbreaking what he has gone through and what we have had to witness.
“One of the toughest things as a father is having to see him deteriorate– it is indescribable. Any father expects to be able to see his lad grow up and play football like other boys but he has never really been able to.
“This operation would be lifechanging and we want to give him his life back. If he doesn’t get it done in the next two years, it will attack his brain and we don’t want to see that happen.
“Jake is a funny, loving and caring son, brother, grandson, nephew, cousin and friend. He deserves a better quality of life and the opportunity for a future.”
Jake, who lives in Spain with his mother, spent nearly a whole year in hospital between the Costa del Sol and a specialised children’s hospital in Madrid.
It was there that a focal cortical dysplasia, an abnormality where the neurons develop larger than normal, was discovered.
The dysplasia is in the motor part of the brain and caused him to lose the use of his left arm and hand, considerable damage to the nervous system and facial paralysis.
As a result, Jake was forced to go through rigorous daily physiotherapy for three months and learned to walk again four times.
However, the hospital in Madrid has told him it no longer has the surgical experience nor technical equipment to help him further and recommended that he has the operation at the Rainbow Clinic in Cleveland.
There are fears that, without the operation, his condition will worsen, leading to severe memory and language deficiency – known as Rasmussen Syndrome.
To help raise funds for the operation, Mr Spencer has planned three events in the district.
First, he has scheduled a coffee morning at Vodafone’s Shaw headquarters on April 3, for which people will be invited to bake and donate.
This will be followed by an event throughout the whole of May called the Newbury to Cleveland Charity Team Challenge, where participating teams will compete to travel the distance from Newbury to Cleveland using gym equipment and attending gym classes.
Finally, there will be a family fun day at Newbury Football Club, on May 24, featuring a six-a-side football tournament, raffle, bouncy castle, stalls, face painting and evening music.
Mr Spencer said that he was hoping that Jake may be able to fly over from Spain to attend the family fun day.
