Owen was born in September 2006 at 1:42pm, Owen was a perfect little baby in every way!
As Owen was growing up month by month, we noticed that milestones were not being reached and Owen was not doing things that he should. At around his first birthday he was referred for an MRI scan to find out what was happening, it became apparent that Owen was quite badly disabled and had severe brain damage. As the months go on we have test after test at various hospitals around the country and eventually in February 2009 we had a diagnosis for Owen - Menkes Disease
Owen was diagnosed at 2 years old, since then all the characteristics of Menkes became more evident, he had bladder diverticulae which was removed last year and also had a gastrostomy tube fitted as he lost the ability to feed.
As Owen became more dependent on tube feeding he also suffered 3 bouts of pneumonia in 2010 due to severe reflux, a very severe chest infection and seizure left Owen on a ventilator for most of October 2010.
Owen recovered and eventually had a Nissens fundoplication operation in Jan 2011, this has helped Owen tremendously as he is no longer able to reflux.
In March 2011 Owen and his family finally made his Make A Wish trip to Florida!! We stayed at Give Kids The World and Owen had the time of his life!
Owen is now 6 years old, he has just finished his first year at school, he attends a special needs school which caters for everything and whatever Owen may need. Owen loves school and also music therapy.
Owen is totally dependent on specialised equipment and lots of medication, he currently has 2 copper injections every 48 hours and lots of other things!