A FAMILY are hoping to raise cash and awareness for a condition which only affects nine children in the UK and 80 worldwide.
Smiling tot Josh Jones, aged four, has the extremely rare and severe neurological condition FOXG1 which means he cannot talk, sit up or walk and has to be tube-fed.
Parents Clive and Kate, from Padgate, are now hoping the international charity they helped to set up can raise awareness among medical professionals and cash for research.
Dad Clive, aged 39, said: “Josh is a four-month-old in terms of his ability and for the first two years of his life he spent three out of four hours each day screaming, crying and being very uncomfortable and unhappy.
“It’s really stressful looking after a child but a big part of that was not knowing what it was that was affecting him.
“Anything we can do to speed up the diagnosis for other parents is worth it.”
Josh was rushed to intensive care when he was born as he was unable to breathe but it was not until he was two-years-old his family finally got the FOXG1 diagnosis.
Clive added: “He was in and out of hospital for the first eight months of his life until a new genetic test was developed in the last couple of years.
“It made a big difference to us getting the diagnosis as we could start researching and investigating what the future would be like.”
The pair, who have been married nine years, found very little as at the time the number of children diagnosed could be counted on two hands.
Eventually Kate, who is expecting a little brother for Josh in April, found people in the same position on Facebook which grew into the FOXG1 Foundation.
Clive added: “We have met up with some of the families in the UK and the children all share the same facial characteristics.
“It’s helpful to know you’re not the only person in that position.
“We now hope to get it recognised as a condition in its own right and a better understanding of the condition with a doctor in America who is willing to undertake some research for us.
“It’s a very challenging condition to live with and has a massive impact on every child and severely limits them in terms of their capability but we’re just making sure Josh is enjoying life and is as happy as can be.”
Fundraisers for the cause this year include Clive taking on the Liverpool half marathon next month and a ceilidh in October at Lymm golf club.
For more information visit foxg1.com.