A Lanarkshire couple whose baby daughter needs complex brain surgery are taking part in a sponsored walk to raise money for Glasgow Children’s Hospital Charity.
Matthew Steele and Nicole Carr’s 14-month-old girl Thea will undergo life-saving surgery to separate fibres in the left side of her brain from the right in a bid to prevent her having seizures.
The tot spent nine days in the neonatal intensive care unit following a seizure just hours after she had been born at University Hospital Wishaw.
Tests discovered that she was suffering infantile spasms, a rare epilepsy, which can cause catastrophic brain damage if not treated.
Thea suffers from seizures every day and was also diagnosed with extensive cortical dysplasia, where the top part of the brain doesn’t form properly, and intractable epilepsy - which can’t be controlled completely by medication.
Surgeons are considering carrying out a 10-hour procedure to give her the chance of a seizure-free life.
Nicole and Matthew, 28, from Wishaw are set to take part in the Glasgow Children’s Hospital Charity’s sponsored walk in Kelvingrove Park on September 4, to show their gratitude for the support they were provided in what has been a tough time.
They have already raised over £1400.
Nicole, 24, who works as a nurse told the Daily Record: “We are so grateful for all the amazing work they do. They are an amazing cause and deserve everyone’s support.
“Thea spent the first nine days of her life in intensive care and doctors were initially puzzled as to what was causing her fits. When we got her home, she started making strange movements which appeared similar to a startle reflex - a typical motor response in babies.
“However, Thea’s movements came in clusters and became more and more frequent.
"Our nephew Jack had experienced something similar, an MRI scan confirmed Thea was a medical emergency and she was rushed back into hospital.
“The condition causes horrendous damage to the brain. We were lucky it was spotted quickly as if it had been left any longer, Thea would have experienced catastrophic brain damage.”
The surgery which could be performed in the autumn at Glasgow’s Royal Hospital for Children will involve cutting fibres to allow nerves in the brain to communicate signals between its left and right sides.
Nicole continued: “Thea is our little superhero and we’re so proud of her. She suffers several fits a day, but nothing gets her down and she’s always smiling.
“It’s such a rare condition and can be easily misdiagnosed so it is vital parents know the warning signs to look out for and don’t hesitate to seek medical help straight away - in Thea’s case that action saved her life.
“The left side of her brain is abnormal, and we need to address the condition now before she gets any older. But still the thought of handing over my baby for such invasive surgery is horrible.
“Deep down we know this is her only chance to lead any sort of normal life. It’s a dangerous, major operation, but we hope it will give her freedom from fits.
“We just want to give her the best chance and we’re lucky to have such a fantastic medical team.
“Looking at Thea you wouldn’t know anything is wrong, she just pushes through her seizures - she really is our little miracle.”
Kirsten Watson, CEO of Glasgow Children’s Hospital Charity, said: “Children like Thea can only benefit from our projects thanks to donations and fundraising, which is why we’re so pleased that our sponsored walk is back after three years.
“It’s a way for people to recognise the amazing work of our city’s children’s hospital, and to recognise 20 years of their generous support.”
You can donate online.
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