THE PARENTS of a toddler who suffers up to 150 fits a day have spoken of their anguish.
Epileptic baby Harry was born to Denise, 33, and Paul Whitley, 32, of Sycamore Avenue, Widnes, in April 2003, but from the outset it was clear their little boy was very poorly.
Denise said Harry was 'twitchy' from birth, became worse and was admitted to Alder Hey Hospital. An EEG showed Harry was suffering seizures in different parts of the brain.
Harry is blind and quadriplegic, unable to use his limbs and cannot even reach for or hold things.
He is resistant to all anti-epilepsy drugs, which worsen his condition. He is one of just 13 patients in the world to have 'malignant migrating partial epilepsy of infancy' and has gone through periods of suffering a seizure every minute. Now the number varies between 20 on a 'good' day to up to 150 on the worst days causing violent limb jerking and Harry to cry and scream hysterically.
The youngster cannot hold his head up or swallow and has to be fed through a stomach tube. He needs suction to clear his airways to prevent choking and has to be fed slowly over an hour with a pump to stop regurgitation.
Social worker Denise and Paul, a HGV driver, thanked everyone who helped. She thanked sponsored walkers who raised thousands and venues including the Childe of Hale pub, the Mersey View, The Clap Gate, The Griffin at Farnworth and the Golden Triangle Cafe for holding fundraisers and collections.
She also thanked O'Connors Transport for donations and designing a home extension for Harry to be built by local companies free of charge and family members who provide crucial help.
Denise said: 'Since leaving hospital our biggest surprise has been the lack of financial and practical help we are entitled to.
'We are not well off and have three kids as well as Harry. We know people who have received thousands of pounds from charities but we are not entitled.
'People began to rally around to help us.'
She added: 'The money has made such a difference. We have been able to buy Harry the best equipment and afford to take him to a centre called Brain-wave in Somerset which works with brain injured children.'
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