‘Colin Farrell speaking out gives us hope for the future’
Carer Charlene Cooper, 35, lives with her husband Paul, 37, and her three children, Amelia, eight, Madison, five, and Hudson, three, in Glasgow. Her youngest, Hudson, was diagnosed with Angelman syndrome in November 2022.
She says, ‘I first noticed that Hudson was falling behind on some developmental milestones at baby group when he was six months old.
‘Of course, you repeatedly hear from people that babies are on their own timelines and he’ll inevitably catch up on his own but, as a mum-ofthree, I knew something was different. Months of tests and unanswered questions left us more baffled and frustrated than before.
‘Then finally, after nearly two years, Hudson was diagnosed with a genetic condition known as Angelman syndrome a week before his second birthday.
DEVASTATED
‘I’d never heard of the condition before and certainly didn’t understand what it would mean for our family. The doctor told us that Hudson would never be able to walk or talk, that he would likely have seizures and severe developmental delays.
‘I could barely hear the doctor’s words as the reality of Hudson’s future dawned on me. Waves of sadness, confusion and guilt swept over me – it wasn’t the life Paul and I had envisaged for our son. I felt conflicted over the fact that we had a seemingly happy, beautiful baby waiting for us at home yet we were devastated over this diagnosis.
‘I typed “Angelman syndrome” into Google and saw thousands of results flash up. The heart-wrenching words “delayed, disabilities and seizures” appeared over and over again. Scrolling through various websites,
I felt worse than I did before – the future looked bleak.
‘But one news article caught my eye. Hollywood actor Colin Farrell had spoken out about his own son who had also been
diagnosed with Angelman syndrome. I felt a slight sense of reassurance that Paul and I weren’t completely alone in Hudson’s journey.
‘Despite doctors’ bleak predictions, Hudson is defying expectations every day. We were told he would be in a wheelchair for the rest of his life, yet he’s taken his first unassisted steps. Medical professionals insisted he would never speak, yet he said the word “Mama” just a few weeks ago. Every milestone he reaches is a huge celebration in our family.
‘Then, in August this year, I opened the message from a friend to find a link to a magazine interview with Colin Farrell. I let out a small gasp as I began reading the piece – it was all about his son James and life with Angelman syndrome.
‘There was a noticeable void of information and news reporting surrounding Angelman syndrome, so seeing the condition being pushed into the spotlight by one of the world’s most recognisable actors was breathtaking.
‘So much of what Colin was describing resonated with us. An international celebrity like Colin raising awareness of Angelman could be transformative. This is going to open so many doors for treatment, respite and understanding.
HOPE
‘And beyond this, it gives us hope for the future for our own son, Hudson. I couldn’t help but recognise the parallels between the two boys’ stories. A tear fell down my cheek as I continued reading what Colin had to say about James. So many of his heartfelt words resonated with me and my family. I felt like he was speaking to me directly through the page.
‘I look at life completely differently since Hudson’s diagnosis – timescales and milestones don’t matter to us now. He brings us so much happiness every day that I wouldn’t change him for the world.’