A BARRY family will mark their epileptic daughter’s first birthday by hosting a fundraiser to help her and other children like her.
Parents Laura and Ashley Mellens, of Fairford Street, hope to raise money to create a sensory room and buy toys and lights for baby Blisse, who was diagnosed with the rare brain disorder Periventricular Nodular Heterotopia.
The 11-month-old’s form of illness is so rare that her parents have only found one page of information on the web, and when explaining her condition, hospital consultants can only tell medical students that 'Blisse is Blisse'.
Blisse cannot swallow properly and is fed via a tube but epilepsy, with fits occurring on a daily basis, is her main symptom.
The seizures present themselves as opposite to those of epileptic sufferers who usually shake – in Blisse's case, she stops breathing and her body turns rigid.
If she is moved during a seizure, it could result in broken bones, so she must immediately be given a liquid medicine known as Buckle.
So far she has spent a combined total of three months on the UHW’s Ocean ward, and the family have also been referred to Ty Hafan children’s hospice.
The family hope that their fundraising event, on October 23 at the Tynewydd Inn, will help improve their youngest daughter’s quality of life.
They also want to support The Daisy Garland – a family-run national charity helping those whose lives have been touched by epilepsy.
Dad Ashley, 29, a British Gas senior business analyst, will have his long locks – for which he is known – shaved off.
And mum Laura and elder daughter Nevaeh, six, hope Ashley’s efforts will raise enough to fund a special car seat so the family can go out together.
They also hope to fund a Squiggles mat system – of which there is only one available in the whole of the Vale – allowing Blisse to move in different positions and help her sit.
Laura, 25, said: "I had swine flu and pneumonia when I was 35 weeks pregnant and had an emergency caesarian section.
"We thought Blisse was going to be fine, but she was born with pneumonia and stayed on the neonatal ward on a ventilator for two weeks.
"It wasn’t until she was four months old, on February 10, that we noticed she started to twitch."
Doctors ordered a lumbar puncture and CT scan, but the family were shocked to find out the results.
"I was devastated," said Laura.
Blisse has now been referred to Bristol Children’s hospital to begin a Ketogenic diet that, it is hoped, will improve her condition.
The Daisy Garland funds Ketogenic dietitians in NHS hospitals across the UK and provides help with support equipment for use at home.
The family has also been supplied with a special monitor, not funded by the NHS, which detects Blisse’s fits so they can sleep during the night.
Laura said: "If we didn’t have that it would have been hell.
"The Daisy Garland supports us and asks how Blisse is.
"We want to give something back.
"People don’t realise how it can affect everything you do," she added.
"I can never leave her on her own and I can’t drive with her on my own. It affects the whole family.
"We don’t know what’s coming, but Blisse deals with it with a smile.
"We would like to thank all the staff on Ocean Ward and all our family for getting us through our toughest year."
BUSINESSES have rallied round to support the family event at the Tynewydd Inn on Saturday, October 23.
The night runs from 6.30pm till late and will feature music, a disco, raffle and auction.
Ruckleys, Francis Kestle, Morrisons, Card Value, Floral Creations, and Gifted have contributed prizes, and Liverpool FC is offering a free tour of its museum for a family of four.
Penarth's Victoria Private Day Nursery will also hold a sponsored teddy-bear hunt.