Gift of joy for Jon, 5

Salisbury Journal: Jon with his parents and Mark Dobbs of the Fordingbridge Co-op. Buy this photo » Jon with his parents and Mark Dobbs of the Fordingbridge Co-op.

THE parents of a four-year-old boy with a terminal wasting disease are overwhelmed after being presented with a specially adapted trike and money to take their son to Lapland.

Steve and Lorraine Heckford from Ringwood were heartbroken when their son Jon was diagnosed with Sanfilippo syndrome in May.

The disease prevents the body removing waste chemicals from the brain and nervous system and instead of progressing like other children, Jon will begin to regress, gradually losing the ability to walk and talk. Those with the disease normally don’t live beyond teenage years.

Mrs Heckford’s friend Mary-Rae Rooke told Ringwood traders about Jon’s diagnosis and within days they had raised £700 to buy him a trike.

The family also received a cheque for £1,500 from a Fordingbridge supermarket, and Jon will go to see Santa in Lapland this Christmas.

Mr Heckford said: “When we first heard about Jon’s diagnosis it was like being smacked in the face. It has taken me a while to realise that I can’t fix this.

“I can’t believe that there is something inside my beautiful boy that is killing him.

“Having the trike will give him better mobility and a sense of independence. He loves the outdoors and this will be wonderful for him. He loves the trike, and a Lapland trip is just wonderful. We are overwhelmed.”

Mrs Heckford, who runs Lorraine Tarrant Antiques in Market Place, said: “It is just absolutely wonderful and amazing that one little boy has affected so many people’s lives. Their generosity will bring so much joy.

“Today there is no cure but tomorrow there might be. Tomorrow is a wonderful thing.”

Andy Manley from the Forge Cycleworks, who organised the trike, said: “I am amazed that the local community has put their hands so deeply in their pockets. It is so refreshing.”

The manager of Fordingbridge Co-op Mark Dobbs said: “The £1,500 was raised by our very generous customers, who entered a raffle at the store, donated funds during a circus-themed day and bought books at the book stall.

“The generosity was overwhelming: I am delighted that the money will give Jon a Christmas to remember.”

Mrs Rooke, who started the campaign, said: “Jon’s little legs are so weak and he’s already lost his hearing. He doesn’t really talk and we don’t know how fast he’ll start deteriorating, so we wanted to get him the bike and the trip to Lapland as soon as we could, so he could build some memories.

“Steve and Lorraine have been told that Jon is very unlikely to reach his teenage years. As you can imagine they are heartbroken at the thought of losing their beautiful little boy, who at the moment is still a happy chappie and a real character.”

Greyfriars Pre-school is holding a charity coffee and cake stall today to raise money for accessories for Jon’s bike.

Mrs Heckford said: “The staff at Greyfriars are amazing. I call them my pink angels, because without them I really don’t know how I would have got through the last few months.”

To donate funds for special equipment for Jon as he gets older email fundsforjon@gmail.com.

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