SPECIAL AID THAT MEANS STROKE GIRL CAN GO OUT WITH HER FAMILY
ADORABLE Mared Lewis was just three years old when she had a stroke. The little girl, now six, began having seizures only four days after she was born.
Her mum. Eirian Lewis, said her daughter had to be tested a few days after she was born because doctors didn’t know what was wrong with her.
It wasn’t until she was three that she was diagnosed with Dravet syndrome – a rare and catastrophic form of epilepsy that develops in an infant’s first year of life and affects between one in 20,000 and one in 40,000 people.
The condition causes frequent and prolonged seizures.
Eirian, 46, said: “When she was one her speech started to slow and her walking was slowing.
“She wasn’t diagnosed was three.”
Up until that point Mared was being treated in various ways for her condition.
But, after she was diagnosed, she was able to take more specific medication to help her control it.
As well as not being able to walk and talk some days, Mared cannot support her own head.
Mum-of-two Eirian, from Pontypridd, said: “She is also now fed through tubes in her stomach, as she had a percutaneous endoscopic gastrostomy (PEG) operation in January.
“This makes sure she gets all the correct nutrients.
“She had a stroke when she was three so it’s helped her since then.
“We think it stemmed from a prolonged seizure.”
Although Mared has been doing fairly well lately Eirian said the family never know what’s going to happen, as the condition is unpredictable.
She said: “Whenever anything happens we get her to hospital as fast as we can – it’s really quite serious.
“Looking back, I remember a doctor coming in and saying ‘Mared will never be normal.’
“I was just thinking ‘What are they saying to me?’ “I was still hormonal. “I was just thinking it was unfair, I was thinking it’s upsetting. “But we deal with it as it comes.” One of the biggest things Mared needs is support for her posture.
Up until a few weeks ago the family had most things to help her but they really needed a special car seat.
A standard high street car seat doesn’t provide the support she needs and if she used one someone always until she had to be with her so she didn’t fall forwards and choke, or hurt herself during a seizure.
The family struggled to fund one until charity Newlife provided them with a specialist seat.
“We didn’t take Mared out anywhere that wasn’t medical appointments or school because of our fear of something happening to her,” said Eirian.
“She needs a car seat with a supportive head rest that can tilt, so it stops her flopping forward and helps her posture, as well as fast-release straps for when she has a seizure.
“Mared is aware of things and gets really frustrated, but when she smiles at me it’s just perfect – it takes my breath away.
“With the right car seat we can do those simple things going out as a family.” y