The parents of a 10-month old baby born with a life-limiting epileptic condition have opened up their hearts and made a passionate plea for help.
Little Olivia Butler suffers from ‘Ohtahara’ syndrome. The brave tot has spent six months of her life in hospital.
Specialists say she is one of only four children in the world who have what is called the ‘EIEE5/SPTAN1 gene mutation.
Her parents have been told she will be lucky to live beyond the age of two.
Symptoms of Ohtahara syndrome include visual impairment, microcephaly, brain regression, cerebral atrophy, ACC and movement disorder.
She is ‘non verbal’, can’t cry or make a noise and has no head control. She is also hypotonic.
Feeding is difficult and sleep near impossible because of regular seizures. Her epilepsy is drug resistant.
Olivia lives in Roughton Moor with her mum, dad, brother Harry (2) and sister Eve (3).
Devoted mum Stacey says that despite everything, the family wouldn’t be without her ‘for the world.’
She is fed through a tube in her nose and is waiting surgery to make eating easier. Her last operation was cancelled because of a junior doctor’s strike.
The family live in a two-bedroom shared ownership home but are desperate for either improvements - or somewhere bigger.
However, they say they feel like they are ‘banging their heads against a brick wall’ because no-one seems to be available to offer help and advice.
Mum Stacey said: “We are at the end of our tether. Everything seems to take so much time and that’s one thing we don’t have. Please, we just want someone to help us - someone who can advise us what to do.”
Olivia cannot be left unattended. She has to be fed every three hours. She is on regular medication, 24 hours a day, and has physiotherapy on her chest four to six times a day.
Stacey added: “It is exhausting but we wouldn’t be without OIivia for the world.
“Even if I’d been told during my pregnancy that she would have this condition, I’d still have gone ahead.
“Along with her brother and sister, she means everything to us.
“She’s so special and even if she might not live beyond two, we want her to have the best life she can.”
Stacey is full of praise for family and friends and particularly her husband Gary who works as a Woodhall Spa butcher but still finds time to help look after all three children.
The family receive some financial support and Stacey’s sister will join her and Gary to help care for Olivia. That means mum and dad will be able to devote time to Harry and Eve who they describe as ‘Olivia’s best friends.
• The family has started a fund raising page and details are available at https://www.gofundme.com/4suye2tw. They also plan other events.