Family aims to raise £60,000 for Jack’s operation

Steve and Shonan Rickard with their son Jack (6) and daughter Ava (6) at home at Uffington EMN-151230-154656009

Steve and Shonan Rickard with their son Jack (6) and daughter Ava (6) at home at Uffington EMN-151230-154656009

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The parents of an inspirational six-year-old have set themselves a target of raising £60,000 to fund a life-changing operation.

Jack Rickard, from Barnack, has been bravely battling the effects of cerebral palsy since he was born.

Jack  Rickard (6) and twin sister  Ava (6) at home at Uffington EMN-151230-154716009

Jack Rickard (6) and twin sister Ava (6) at home at Uffington EMN-151230-154716009

The condition affects muscles in his legs and arms, making it difficult for him to stand up, walk and balance.

Thanks to his determination and effort he has developed better than expected. But his parents Steve and Shona are concerned about the effects his condition may have on his physical health as he grows up.

They want the best for their son, and have been told by doctors at Great Ormond Street Hospital in London that Jack would benefit from a surgery known as selective dorsal rhizotomy. But the procedure is currently under review and may not be available in the UK on the NHS for another three years, by which point Jack will be too old to qualify for it anyway.

Steve said: “The hospital has told us that they feel he would significantly benefit. As he grows, the condition will not help because his muscles don’t keep pace with his bones and he may need future surgery.

“He can just about walk to school but that would be it for the day. We just really want to keep him on his feet.

“The decision point will be in three years and Jack will miss that ideal window. The NHS will only fund it until the age of eight.”

The only option for the family is to try to cover the £60,000 cost of the operation and aftercare themselves. This would be done on a private basis at Great Ormond Street. So they have started a fundraising campaign called Jack’s Journey.

“We feel that because of the effort he puts in and his outlook that it is worthwhile,” said Steve.

“He’s done really well since he was born. A lot of the doctors thought he might be struggling to walk and if he did he probably wouldn’t be able to stand up unaided. But we have found over the years that he has got an incredible amount of courage and determination which has led him to surpass all of those expectations.

“He’s managed to learn to walk. He’s now able to stand unaided. He can run, although he falls a lot.”

“We are always trying to be positive about his achievements,” added Shona. “It’s all physical. It can be heartbreaking sometimes, watching him in the playground. He can’t really play football because his balance is poor and he gets knocked over. He always needs to have a wheelchair on school trips.

“But in the classroom he’s like any other child.”

The family held their first event before Christmas, when they went carol singing on a float Steve designed to look like Santa’s sleigh.

“It was something we did to see how it would go and we raised £560. Everyone asked if we could do it again,” said Steve. “The village is really behind us.”

Barnack church and the Millstone pub have both offered to raise money for the cause. And Susie Richards, charity co-ordinator at Sibson-based UK Parachuting, has organised a sponsored skydive on April 16. The cost of the jump is £200, and every penny raised above that will go towards Jack’s Journey. To book, visit skydivesibson.co.uk/charity_event/jacks-journey/.

Steve and Shona know £60,000 is a big target to hit.

Steve said: “It’s a large amount to raise. We are just trying to be positive. It’s going to be a really buys year. We are just trying to do as many events as we can.”

But seeing their son playing with his twin sister Ava or his friends at school provides the inspiration they need. Ava is not affected by the same condition as her brother.

“Jack puts a massive amount of effort in. He works very hard,” said Shona.

To help Jack’s Journey e-mail srickard9@aol.com or visit www.facebook.com/jacksjourney6.