Hugh was born in 2010, and despite spending his first week of life in the neo natal unit we weren’t initially aware that he had any difficulties.
As the months passed and he didn’t develop as expected the hospital began running tests. By the time he was 7 months old, we discovered his brain was under-developed and that he had an underlying genetic condition. This condition is, as yet, undiagnosed. It is likely to be something incredibly rare and there is a possibility we will never know the specific gene fault that has caused Hugh’s many and complex difficulties.
Hugh stopped breathing for the first time at 9 months old. He continued to do this frequently and it was some 4 months later before we discovered they were a rare and life threatening form of seizure. Despite various anti-epileptic medications, Hugh continues to stop breathing regularly and needs to be resuscitated with a bag and mask when he does. At its worst, Hugh would stop breathing over 30 time’s a month and he was frequently rushed to hospital via ambulance, sometimes twice a week. Recently he’s had some respite with a gap of 6 months between his large, not-breathing seizures, thanks to a special implant called a vagus nerve stimulator which interrupts the brainwaves and tries to prevent seizures. He still has seizures most days, but thankfully not ones that require resuscitation or hospitalisation.
Hugh is 7.5 years old now and is a very happy boy. He attends a local special school where he enjoys swimming and time on the Ipad or in the sensory room. He loves helium balloons and being outside in the wind. Despite his frequent hospitalisations, Hugh always has a big smile. He finds enjoyment in the simplest of things and brings so much joy and happiness to all the people that know and love him. Hugh uses a wheelchair which is decorated with lots of superheroes and he’s been know to dress up as Captain America on occasion.