Charlie was born by emergency caesarean section as his heart was erratic and then very slow. He had the cord tightly around his neck and was born coma state. He was intubated quickly as he was making no attempts to breathe.
It was initially thought to be down to birth stress and trauma and in a few days he would wake up but he didn't. Day four they ran a 72 hour eeg. He had no brain responses apart from seizure activity and it was felt it would be kinder to let Charlie pass away. We were against doing this, so I reached out on Facebook to the NKH community and we pushed for the recommended medicines. Once the medications were administered, within a week Charlie was awake and had an MRI and EEG that showed slow brain pattern. He demand breast fed, we learned to administer meds and then went home.
At four months Charlie had his first proper seizure that wasn't myoclonic jerks, so started meds for that. Age 2-3 Charlie had a horrible year, of seizures and health ups and downs, constantly catching everything,. He has four siblings and as much as we tried to avoid it he had a lot of hospital admissions. During that time he was very poorly, they told us he was dying and sadly he lost the majority of his eating skills. Initially had a peg fitted aged two, and changed to a button aged 3.
Charlie enjoys school, and loves the staff and all his friends. He is non-verbal, but that doesn't stop him communicating his presence. He has the most wonderful smile that lights up a room. Going to school was huge for us as Charlie is life-limited and wasn't expected to live six months.
He recently turned 9, aside from covid meaning he couldn't go to school since February 2020 and get out and about, his condition has also progressed. He had 4 critical care admissions to TY Hafan Hospice last year and one this year. Charlie was in a lot of pain, and is now on morphine patches for hip dislocation, which can't be repaired as he is too high risk. He has scoliosis and developed tardive dyskinesia/dystonia, which we are currently trying to control. His movements are distressing to him ,some days more than others. He can look quite still but the muscles in his legs and arms feel like they are rolling and popping. His progression has also massively affected his sleep because his brain isn't being sent a signal to shut down, so can stay awake for 30-70 plus hours at a time. He then sleeps for a couple of days solidly to catch up.
With all that he has to cope with, on a good and awake day Charlie is the happiest child. He loves a good chat and a Disney movie, will laugh at the most inappropriate things and is a joy to be with. Everyone who meets him loves Charlie.