BiographyCharlie is our first born of 4 boys. Charlie was born via emergency c-section at 37 weeks after having reduced movements. He was born weighing 4lb 10oz. He was born on his nana's birthday.
He spent his first week in hospital in the Neonatal unit till he could feed properly then we could go home.
Although we thought things were going well as new parents, when we think back there were little tell tale signs that something wasn’t quite right. I felt his eye sight wasn’t developing as it should have been, he struggled to drink from his bottles, he made these arm movements which we passed for normal baby behaviour, but all these little things we were experiencing were actually the fact Charlie had cerebral palsy and was also delayed with his development.
When he was 4 months old we were out for the day. We had been walking around some gardens for about 10 minutes when Charlie had stopped breathing, he had gone blue. 2 passers by fortunately who were a nurse and a doctor brought him back whilst we waited for the ambulance.
After so many tests and bloods and more episodes of him stopping breathing and being resuscitated he was finally diagnosed with a rare severe form of epilepsy, West syndrome. Charlie had only recently learned to smile but it all disappeared. He stopped doing it. We were told he may never smile again. We were heartbroken.
I think at that time we didn’t fully comprehend how life would be for Charlie. I think we thought everything would be ok.
Charlie was never a settled baby he always cried so much.
Charlie's first two years went by in a blur, so many hospital appointments, milestones not being met, grieving for a child who you don’t know how long or how his life will be affected, it was one of the hardest times of my life.
Fortunately after 5 months of medication and trials Charlie's seizures had stopped. His smile was back! He even started to laugh!
Charlie is wheelchair bound and he cannot sit unaided and will never walk. He has use of his arms although he is weak but he can work his iPad on his own which he loves to watch his Formula one on you tube and FaceTime his nana who he has an extremely close bond with.
It’s seemed that once he got passed the age of two Charlie started to thrive. He was learning things, he said his first word! Since then we have never looked back! Charlie's vocabulary is amazing. His understanding and communication is second to none.
He has been through so many different operations in his short life already, Botox injections for his spasms, muscles cut and stretched, mic-key button for his fluids and now milk feeds, baclofen pump.
His latest big surgery was literally just short of a year ago Charlie had severe scoliosis. It was affecting his eating and keeping his milk feeds down as the curve was right across his stomach. He’s had spinal rods fitted after a lengthy 9 hour operation which saw him in intensive care after. We really thought we were going to lose him. He’s currently awaiting his next big surgery which is both hips and both feet.
I am so proud of how Charlie copes with all that he’s been through and has yet to go through. He seems to take it all in his stride and with his trademark smile on his face. He’s our pride and joy, our absolute world and he means the same to his 3 younger brothers, even if Charlie does like to boss them around!
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