Our son, Joseph Michael Kendrick, was born on May 9, 2009 after an unremarkable pregnancy at 42 weeks. At birth he was noted to be very quiet, but thought to be otherwise healthy.
Over the next couple of days, however, he rapidly deteriorated, stopped waking for nappy changes and feeding, and fell into a coma. Joseph was immediately taken to PICU (Pediatric Intensive Care Unit), where they began testing him to find the cause of his lethargy and low muscle tone. After six frantic days, we found out that Joseph had a severe form of a very rare genetic, metabolic disorder known as NKH. We were absolutely devastated.
As if we didn’t have enough to worry about, we were then told that Joseph was unlikely to live past day 10. And, if he did, he almost certainly wouldn’t reach his first birthday. Thankfully, we had our families around us. Their unwavering support got us through those dark first few days. Every day we would stand around our little boy’s cot praying that he would wake up, open his eyes or cry. We were told of a special medicine – sodium benzoate - which may help to wake him up and remove some of the glycine from his brain, but not from his cerebral fluid.
Eventually, on day 13, Joseph finally ‘woke up’, he started crying, and he seemed to act more like a ‘normal’ little baby. We were able to change his nappies, feed him via his ng tube and cuddle him. To us, that was everything. We were told that he was very jerky due to a kind of seizure called a myclonic jerk and, if he lived, these would turn into other types of seizures. Joseph did get through those horrible early days in hospital, and we were able to take him home after about a month. We had a very worrying year waiting for him to become as poorly as we had been told and to stop breathing - but thankfully he never did.
Joe has now reached nine years old, and is doing remarkably well despite his condition. He still has frequent seizures, but he now takes medicine to help control them. Joe ate orally till he was 4 years old but now has a gastrostomy for milk and medicines which is much easier to feed him through. Joe still manages tasters of food when he’s well and particularly enjoys yoghurt and ice cream in the Summer.
As parents, we are very proud of our strong and resilient little boy. He has done so well and so far has exceeded all expectations. He has shown us that he wants to fight all the way – and we are determined to fight on his behalf to help create awareness of this devastating condition, find a better treatment for him, and one day find a cure for NKH.