Balmaclellan actor Sam Heughan has enjoyed success at the Scottish BAFTAs.
Scots couple hail 'lifeline' charity after son diagnosed with rare condition
05.11.2022 - 15:27 / dailyrecord.co.uk
Loving Barrhead mum Louise Countenay is not a woman of faith. But, since someone told her during a visit to CHAS’s Robin House that she’d been chosen to have son Adam for a reason, those are words she truly believes.
When Adam Courtenay came into the world on September 23, 2016, mum Louise, dad David and big sisters, Tegan and Emma, instantly fell in love with him.
A seemingly healthy baby boy who was thriving at home, Adam was five weeks old when he attended hospital for a routine MRI scan to check the depth of the large port wine stain birthmarks with which he’d been born on his face, back and legs.
The call Louise and David received from the hospital later that same day was to turn their family’s world upside down.
The scan had revealed that Adam had Sturge-Weber syndrome, an extremely rare condition that affects the brain, eyes and skin.
“They arranged an appointment for us to go in the next Tuesday and speak to the specialist. They asked us not to Google it over the weekend,” said Louise. “Of course we Googled it.”
But on the morning of the appointment, Adam had his first epileptic seizure and was rushed to Glasgow Children’s Hospital.
“From that moment on, everything kind of escalated and we found out more about the condition,” said Louise, 41.
Typically, those who have Sturge-Weber syndrome (SWS) have a port wine stain – a vascular birthmark caused by abnormal development of blood vessels in the skin, as well as an extra layer of blood vessels over the surface of the brain which can cause seizures.
Louise explained: “Sadly, Adam has the most severe type called bi-lateral Sturge-Weber, which covers the majority of his brain. This means that only a tiny part of his brain can develop while the rest of his brain will get
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