THE parents of a little boy from Leasowe, who was born with a rare genetic condition, have organised an event to raise funds for a special piece of equipment to help him get out and about.
Proceeds from the fundraising afternoon at Oldershaw Rugby Club in Wallasey on Sunday, September 29 will be used to buy an X rover trailer bike for five-year-old Harry-John Sheridan, who has a scn2a gene mutation which affects his speech and mobility.
The bike trailer will enable him to go out on bike rides and paths his wheel chair can't access.
Harry was only a few weeks old when he developed an unusual cry and his body began to seize up.
Parents Sean and Neehmah took Harry to the doctors regularly to be told and reassured nothing was wrong with him and him being diagnosed colic and reflux.
It was only when they attended a outpatient appointment at hospital that Harry began to seize again and a nurse knew something was wrong so she informed the consultant.
His parents told the consultant this was happening 20-30 times a day and during the night Harry was admitted to hospital when just two months old. He was transferred to Alder Hey from their local hospital and put under the care of Dr Israni and his team of nurses and doctors.
Harry's dad Sean has just completed the first challenge riding from Leasowe to Betsw y Coed, hiking from Betsw y coed to Llanberis and climbing Snowdon twice before riding home to Leasowe.
The event raised £1,760, but the family needs £5,000 for Harry's new bike trailer.
During the fundraiser afternoon at Oldershaw Rugby Club there will be games, including a raffle, bingo, tombola. There will also be a cake sale from Moira Bonner and games for kids.
In a post on the family's justgiving page, Sean wrote, "We are raising money for specially adapted bikes unavailable on the NHS and to raise awareness about Harry's condition so other parents can access support networks.
"Having this trailer would provide Harry the opportunity to enjoy the beach and trails he loves, Harry loves listening to the seagulls and feeling the waves at his feet as he expresses himself through sensory stimulation.
"Harry's wheelchair isn't designed for this kind of terrain so we often carry Harry but as he is getting older this won't be possible.
"Despite the help from the NHS, occupational therapy and physio therapy there is a lack of funding for specific equipment.
"Recently we went on a family holiday and hired electric bikes and Harry sat in the back of a trailer and he loved it so much he laughed from the start to the end.
"Unfortunately the one we desperately need is £4,695 as it will be adapted.
"We would also like to raise money to give other kids like Harry the opportunity to access the outdoors like any other child their age."
Appealing for help from the public, Sean continued: "As parents we will both be considering parachuting from a aeroplanes, zip-lines, abseils and fundraising events.
"We would deeply appreciate any donation however big or small."
To support the family's justgiving appeal go to: https://gofund.me/5da94165
For more on the fundraising //www.facebook.com/profile.php?id=61560052235060
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