Sean was born a normal healthy little boy at term and a good weight. He then at around 2months old struggled with his milk and would just cry all the time. We were told by HV that he had colic and was just a whiny baby!! At 4 months he presented with these awful weird movements that were followed with a scream and his skin began to weep. Doctors told us there was nothing wrong with our baby boy but we knew something wasn't right. We took him to hospital for skin wraps as he now had severe eczema. A neuro doctor told us he suspected these jumps and screams where possibly infantile spasms!! Two days later he had an EEG which confirmed a devastating diagnosis of IS - horrible seizures that had to be treated with a high dose of steroids. He then had an MRI on the 10/01/11. 2 hours after the MRI we were taken into the small room at the end of hospital ward that no parent wants to go to! That's when we were given the diagnosis of bilateral perisylvian polymicrogyria, a brain malformation that happened when I was pregnant. We were told he would never be a normal child and would most likely need help all of his life due to the severity of his PMG and that seizure medication would continue throughout his life also. We felt broken as parents and didn't know where to turn for support or help and how would we tell he 2 big brothers that their little brother was not well and that life as we knew it was going to change forever.
Sean was then diagnosed with cerebral palsy at 15moths old. He had to have a feeding tube placed in his stomach as he had an unsafe swallow due to his PMG and therefore was silently aspirating all his food and seizures medication and was in hospital numerous times with severe chest infections and pneumonia. He then followed on to have fundoplication surgery where they tied the oesophagus to stop the reflux, at 3/4yrs old. He had his saliva glands removed due to basically drowning in his own saliva. He had had left and right hip reconstruction surgery. And now is due for spinal surgery as he has severe scoliosis which is affecting his lungs and his quality of life. He has Lennox gastaut syndrome which is a drug resistant severe epilepsy and is on oxygen at night along with long term antibiotics and a pep mask for helping clear his chest and uses a suction machine as he can't clear secretions on his own.
Sean will be 11 in July and we are amazed he is still with us after all he has been through since he was born. When he has good days he is bright funny and always smiling, and has so much love for everyone. He is so much more clever than what the neuro doctor told us he could be. His brain malformation is so severe they told us when he was just 5months old that he wouldn't even recognise us let alone anything else. He suffers seizures 24/7 and CBD trial didn't work so he has just finished a high dose of steroids and we are hopeful, but our boy is a fighter and so brave.
He is non verbal but shouts and points to communicate and gets very frustrated because he is so clever but just can't do anything because his brain won't let him. He has always been in a wheelchair and can't sit unsupported but he is our world and more and we will fight this battle with him every step of the way on this journey with him.