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When Alexander was born he wasn't expected to survive without a ventilator. Now four years old, Alexander is benefitting from '˜life-changing' support from the East Preston community.
Kirsty and Jon Lester and their son Alexander at their home. Picture: Derek MartinKirsty and Jon Lester and their son Alexander at their home. Picture: Derek Martin
Kirsty and Jon Lester and their son Alexander at their home. Picture: Derek Martin

Local companies have rallied around Alexander and his family, helping raise £20,000 to help fund vital improvements to their house.

“Alexander was born at home without any expectations of any problems,” his mother Kirsty Lester said. However he had to be put on a ventilator when he was just days old, 35-year-old accountant Mrs Lester said.

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At eight days old Alexander was diagnosed with Nonketotic Hyperglycinemia, a rare disorder causing seizures and developmental problems.

Emma Weaver (left) and Liz Galloway of Caldotec, with Colin Bradshaw from the Clockhouse Bar giving a cheque to Alexander and Kirsty. Picture: Bob BillingshurstEmma Weaver (left) and Liz Galloway of Caldotec, with Colin Bradshaw from the Clockhouse Bar giving a cheque to Alexander and Kirsty. Picture: Bob Billingshurst
Emma Weaver (left) and Liz Galloway of Caldotec, with Colin Bradshaw from the Clockhouse Bar giving a cheque to Alexander and Kirsty. Picture: Bob Billingshurst

“Basically he was not expected to survive off the ventilator.”

But Alexander did survive.

Now four years old and off the ventilator, Alexander is a ‘fighter’ who ‘just gets on with whatever life throws at him’, his mother says.

However as he has grown older, Alexander’s condition has become more difficult for his parents to manage.

Emma Weaver (left) and Liz Galloway of Caldotec, with Colin Bradshaw from the Clockhouse Bar giving a cheque to Alexander and Kirsty. Picture: Bob BillingshurstEmma Weaver (left) and Liz Galloway of Caldotec, with Colin Bradshaw from the Clockhouse Bar giving a cheque to Alexander and Kirsty. Picture: Bob Billingshurst
Emma Weaver (left) and Liz Galloway of Caldotec, with Colin Bradshaw from the Clockhouse Bar giving a cheque to Alexander and Kirsty. Picture: Bob Billingshurst
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Kirsty and Alexander’s father Jon, who works as an engineer at Shoreham Airport, normally bring their son downstairs in the morning, but won’t be able to go back upstairs frequently because Alexander is becoming too heavy to carry.

They decided to extend their home in Princess Avenue in West Worthing to allow for a bigger bathroom with a hoist as well as a lift and other much-needed equipment.

However the money they received from the government wasn’t enough to cover the £90,000 the extension was going to cost, so when they approached local architecture firm Caldotec, they knew they would have to find a way to raise the rest of the money.

Caldotec however were so taken with Alexander that they joined the fundraising effort themselves, getting other businesses involved too.

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“Caldotec have been amazing,” said Kirsty. “They were really keen to get involved.

“They were the ones who initiated the larger scale fundraising for us. Without them it would be another year down the line.”

A Caldotec spokesperson said: “We at Caldotec donated our services free of charge as the budget was so tight and the family so desperately needed the project to come to fruition. Even with a local authority grant, the cost of the works was well over the funds that they could raise.

“The whole team at Caldotec were touched by the family’s courageous efforts but also fell in love with this gorgeous boy and decided that we wanted to do something to help.”

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Caldotec set up a fundraising page and embarked on a campaign to support Alexander, with other businesses getting involved along the way, including the Clockhouse Bar.

Staff at the bar presented the Lester family with a cheque for £618 on Monday, and are planning a sponsored parachute jump to raise more money.

Work has now started on the house and Jon and Kirsty hope to see it completed by the end of April.

“It is going to be life changing really. It will just mean that so much more can be done with Alexander in terms of normal family life,” Kirsty said.

“To the people of East Preston we are just so grateful they have taken us under their wing. We have been quite touched by the fact that they have really rallied around us.”

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