When pregnant Lindsey Smith started feeling her baby bump moving, she thought nothing of it other than motherly pride.
But little did she know that the movement she was feeling was actually her unborn child having a seizure – the first of many that would plague his young life.
Little George Smith was eventually born five weeks premature and it would be six weeks before Lindsey and husband Nick Smith witnessed another seizure.
The 32-year-old mum said she was oblivious to the health problems her baby son was suffering. She said: “I didn’t realise anything was wrong. It turns out that George was having seizures before he was even born.
“It felt like he was vibrating – but it only happened a couple of times.
“When I was 30 weeks pregnant he stopped growing and the blood flow to his head had reduced.
“So we kept an eye on him but we did not think anything was wrong.
“There were no visible signs when he was born until we went in for his six-week check-up.
“He started shaking in that way we know as someone having a fit – these fitting movements.”
George, who is now two, sometimes has 50 to 70 fits a day and has been in and out of hospital.
He has now been diagnosed with CDKL5 Deficiency Disorder, a rare neurodevelopmental condition characterised by epilepsy and which impacts the cognitive, motor, speech and visual function. The disorder can also cause gastrointestinal difficulties.
As a result, George cannot walk, talk, sit, stand or use his hands. He is also blind.
George’s mum said: “George is completely dependent on us.
“He has unfortunately also suffered from infantile spasms which is a devastating type of epilepsy, twice.
“After this happened, he regressed to being like a newborn baby and lost all his skills – which we are working on helping him relearn.”
Northfield resident Lindsey said it was “the worst feeling” to watch her son collapse at just 12 weeks old, but two years later her family is taking the condition in their stride.
She said: “We are very fortunate he had an amazing team of specialists at the hospital.
“At the time he was diagnosed the doctors said it was thought only 1,200 children worldwide had the condition. Compared to what could have happened, we know George is a very lucky boy.
“We don’t know if he will live – there’s not a timeframe for his life. So we’re not going to spend our time being miserable and we don’t busy ourselves with the rubbish.
“George is our little fighter. He’s amazing and has the blondest hair which is what everyone first notices about him. George is so loved – I could not ask for a better support system.”
The couple, who have since gone on to have another son, Archie, have been fundraising for the charity CDKL5 UK since George’s diagnosis. His grandparents Suzanne and Ian Elrick organised a sold-out ceilidh. And Suzanne and her friend Lynn Taylor walked the West Highland Way last year and raised £1,000.
Lindsey added: “In 2018, we raised over £6,000 for CDKL5 and the Archie Foundation and we hope to raise more for CDKL5 UK this year across multiple fundraising events.
“These genetic mutations are only being discovered thanks to the introduction of genetic testing for epilepsy.”
To find out more about the family’s fundraising events and to donate visit: bit.ly/2LuPYIa