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Andrew Dawkins and Sarah Finney met in 1998 and live in Hucknall, a market town close to Nottingham. Andrew, who was diagnosed with leukaemia in the late 90’s and underwent chemotherapy, was told that he’d be unlikely to father children so naturally, the couple were delighted when Sarah fell pregnant in 2004. Fortunately, Sarah’s pregnancy went ahead without any problems and in 2005, Freddie and Louie were born. The twins stayed in the hospital for neonatal care for three and a half weeks before being sent home to start family life.
Born healthy in 2005, there were soon symptoms that started worrying Andrew and Sarah. The boys could not sit until they were 11 months old, and did not walk or speak their first words until they were almost two years old. At the age of two the boys were diagnosed with autism and at three, were completely blind.
After a series of blood tests at Great Ormond Street Hospital, in 2009, Freddie and Louie were diagnosed with the rare form of Batten disease, late infantile variant CLN5.
“It was the worst news a parent could ever receive. When we got the diagnosis, we were told it was fatal and that was the hardest thing to come to terms with. Back then, we wished for it to be something else, something that at least had a chance of survival.”
Freddie is the quieter of the boys and likes his own space. He has a “safe tent” in his room where he likes to spend his time after school to offload his mind. He loves listening to music at carnivals, festivals and on the TV. Freddie has the worst of the epileptic seizures which we are just getting under control.
Louie is the cheeky monkey of the family and loves winding his parents up. He often stands by the light switch flicking it on and off, smirking and laughing. Louie had his first epileptic seizure in August 2014 but he is a typical boy and loves playing, being turned upside down and spun around.
“Freddie and Louie can’t speak and have cognitive disabilities so we communicate in our own way with simple language like “Freddie crisps” or “Louie Bedtime”. Sometimes, it’s like having babies again especially when he have to guess what is distressing them because they can’t tell us, but we always get there in the end. The boys both love pre-school toys, particularly squeaky, noisy ones – as it appeals to their other senses. We take every opportunity to get out and about taking in the smells, sounds and vibrations that help the boys feel alive.”