A Kirkcaldy couple have launched a bid to create a “forever home” for their son who has up to 15 seizures a day.
Six-year-old Stewart Lynch, who lives in the Newliston area of the Fife town with parents Gemma and David, was diagnosed with Lennox-Gastaut syndrome aged just two.
The life-limiting condition is a severe form of epilepsy which begins in early childhood.
It has caused Stewart to lose many of his abilities, meaning he must be with an adult at all times.
Gemma and David, both 37, now want to make changes to their home to ensure their son can stay with them.
‘This is about keeping him at home for as long as possible’
David, who works at McDonald’s at the Fife Central Retail Park, told The Courier: ” Lennox-Gastaut syndrome is a drug-resistant form of epilepsy so Stewart is on various drugs but there is no treatment to make it stop completely.
“This is about keeping him at home for as long as possible.
“We used to live in Kinglassie but we moved to Kirkcaldy to be closer to the hospital and to have more space.
“Stewart is a wheelchair user but he can walk – he has splints to help his walking.
“He uses his chair every day. If we are going somewhere we start in the buggy and he can get out for maybe five or 10 minutes.
“Right now he also has a safe sleep space, a structure in his bedroom where he can’t harm himself if he has a seizure.
“I sleep on the floor next to it as most of his seizures are during sleep.
“I have also got a camera in his safe space and I watch what happens.
“As part of the work, we will put in a single bed beside him.
“We have used air beds and stuff in the past but it’s too much to move about every day – I just grab a pillow and sleep on the carpet.”
Kirkcaldy boy has up to 15 seizures a day due to severe epilepsy
The family have installed a stair lift and a bath lift as a short-term solution, but neither will meet Stewart’s needs as he grows.
David says Fife Council has given £20,000 to help with alterations to the house but more is needed.
The couple are trying to raise £72,000 through Sullivan’s Heroes – a charity that provides grants and support to help families of disabled children – for “Stewart’s forever home”.
Any donations will go straight to the charity to be distributed to the project as needed.
David, who regularly has to leave work to help with his son, said: “Stewart will have his own entrance as we are going to move to a wheelchair vehicle in the next year or so.
“I can lift him but my wife can’t manage.
“All of the downstairs doors will be widened for him and a wet room will be put in.
“There will also be a new kitchen to create space and that will mean he will be able to access the whole of downstairs, plus his own bedroom.”
Stewart attends Rosslyn School for pupils with complex additional support needs.
David and Gemma, a nursery teacher in Rosyth, must make sure he sticks to a strict ketogenic diet – high-fat and low-carbohydrate – as well as his medicines.
Lennox-Gastaut syndrome is one of just a handful of conditions where medical cannabis can be prescribed and David says this has helped Stewart a lot.
He can suffer anywhere from one to 15 seizures a day and also has to take preventative antibiotics in winter.
David said: “It is unfortunate we don’t have the money there for the changes to the house and we are relying on goodwill.
“It is all to make sure Stewart can stay at home with us.”
