Help Harry John's adapted bike fundraiser, scn2a awareness

This is our story of our lovely Harry-John (HJ) journey and diagnosis.

When HJ was a few weeks old he developed a unusual cry and his body began to seize up. We took HJ 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 we attended a outpatient appointment in our local hospital HJ began to seize again and nurse knew something was wrong so she informed the consultant.

We told the consultant this was happening 20-30 times a day and during the night and he immediately admitted HJ to hospital at a tender age of two months old.

We were transferred to Alder Hey from our local hospital and under the care of Dr Israni and his team of nurses and doctors.

The support they gave us as a family and the care that HJ received was excellent.

Six months after being discharged from Alder Hey we received a letter of HJ's condition and attended a clinic to speak to a genetic doctor. With this consultation we received a leaflet and very vague infomation about the diagnosis of SCN2A and that the condition was very rare there was no support groups to attend to speak to other people about it. However the only support we found was through social media by Facebook.

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 opertunity 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 HJ 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 for HJ. We would also like to raise money to give other kids like harry the opertunity to access the outdoors like any other child their age.

We are in the process of organising challenges the first one being HJs dad is going to ride his bike from the Wirral to Snowdon and there walk from Pen Y Pass to Llanbaris and then cycle back the Wirral. 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.

Sean, Neehmah and harry - John