Raising awareness for brave Jack who has up to 20 seizures a day

Little Jack Gilvarry suffers from a very rare genetic disorder called FOXG1 and he is one of only 176 people who has the condition in the world.

It means he suffers from severe epilepsy and doctors were forced to put him in an induced coma twice this year as they tried to get his fits under control.

Jack has no communication skills and is registered multi-sensory impaired, which means he cannot process sights and sounds.

He is also unable to eat or drink on his own so he is fed solely through a gastrostomy tube into his stomach.

His parents, James and Debbie, want to raise awareness about their son’s condition so more research can be carried out to help find a cure.

Mr Gilvarry, of Park Avenue, Allerton Bywater, said: “It has had a major effect on Jack’s life as it restricts us from going on days out as the noise can set off his seizures.

“His qualify of life has been really hindered and seeing him in intensive care was the scariest part for us. Despite everything, he is the happiest little boy and is always smiling.”

The parent of another child, who has the same disorder, has set up website to raise awareness about FOXG1.

They hope to raise £5,000 to get the charity registered, which could lead to more research being carried out and extra support for families.

Mrs Gilvarry said: “FOXG1 is a devastating disability. Once the charity is registered then they can apply for grants to fund research.”

To support the cause log onto www.foxg1.uk