Candice tells us about her daughter, Winnie, and her diagnosis of Alexander Disease
Our little girl Winnie Wednesday Griffiths was born on 11th May 2022 and she was perfect. When she was 6-7 months old Winnie’s sickness got more often and she started to loose weight. She started to see a dietician and started physiotherapy, but Winnie wasn’t gaining weight. We had been sent back to our local hospital one day and there was a consultant on duty who we hadn’t seen. She read Winnie’s notes and requested an CT scan that morning and then a MRI, when she explained that they found something in the scan and that Winnie had to be transferred to Cardiff’s Noah’s ark, I felt a bit of relief. Finally we would get some answers.
The answers weren’t what we were expecting. We were told that Winnie had a form leukodystrophy when she was only 10 months old, the consultants thought it was Alexander disease, but we had to get air for genetics for the diagnosis.
Winnie had a NG and NJ fitted and we were told to spend special time with Winnie because they don’t know how fast growing the disease will be. We were home for nearly 4 weeks when Winnie went very lethargic, she was rushed into our local paediatric high dependency ward and then to intensive care a week or so later.
I found Alex TLC when I was trying to make sense of everything and signed up for the 50/50 to give something back to a charity that guided and helped us understand. Winnie was diagnosed with Alexander disease a few days after she had a bad turn, we were told there was nothing they could do. After exhausting all avenues we made the tough decision to go to Ty Hafan children’s hospice on the 6th July 2023.
Having Winnie completed me, loosing her has broken me.