What the press ball means for youngster
AS PREPARATIONS for this year's press ball step up a gear, a Suffolk mum Nicola today spoke of her gratitude to the fundraisers involved. Nicola Lee, 37, and her son Harry Toop, of Kipling Drive, Stowmarket, have already benefited from the thousands of pounds raised for Disability Care Enterprise (DCE) by the Press Ball and this year is no exception.
AS PREPARATIONS for this year's press ball step up a gear, a Suffolk mum Nicola today spoke of her gratitude to the fundraisers involved.
Nicola Lee, 37, and her son Harry Toop, of Kipling Drive, Stowmarket, have already benefited from the thousands of pounds raised for Disability Care Enterprise (DCE) by the Press Ball and this year is no exception.
The four-year-old has a genetic brain disorder called Lissencephaly. Diagnosed when Harry was three months old the condition is so rare it affects less than 200 people in the country.
The condition results in severe learning difficulties.
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Mrs Lee said: "Harry's brain is totally smooth, ours are rippled. He has seizures and fits. He cannot see very well. He cannot do anything for himself, he is totally dependent on me."
Nicola also has an older boy Callum, aged 13.
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She said: "Harry's Dad isn't around anymore, he left last year so I am a single mum.
"The money raised at the press ball has helped me every year. A year or so after Harry was diagnosed I got a bubble light tube."
Thanks to the success of the Press Ball three years ago Harry was also given £2,000 by DCE for a special snug seat, a padded chair which helps him sit up.
And this year the DCE has helped Nicola and Harry again.
In need of a car seat £200 was given to the family, so they can take Harry out with them.
Nicola said: "I cannot work as Harry needs me with him all the time. Now I am on my own I cannot afford things like that. Equipment for Harry is very expensive, if there is something I really need the DCE will help me out."
Relying on the support of her parents and friends Nicola said looking after Harry was a demanding but rewarding job.
Nicola added: "Harry is a happy little boy, he is full of smiles and laughter. He likes the Fimbles and Tweenies and he loves music. I am very grateful to the supporters of DCE for what they do."
N Sponsored by Call Connection Press Ball 2005 takes place at Hotel Elizabeth, Copdock on June 24. Organisers have set a target of £20,000 to raise for DCE.
N Weblink www.lissencephaly.org.uk