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Our Story

On 6th June 2011 I Darren and my wife Janine, were blessed with the arrival of our precious son Joseph George who was a beautiful brother for our 12 year old daughter Alicia.  During the first few weeks of his life Joseph was a happy boy with no problems apart from a few feeding issues and we were enjoying being new parents again with our little man.  At seventeen weeks and after a couple of suspected chest infections our lives were to be turned upside down as Joseph was admitted to Sunderland Royal  Hospital with yet another suspected chest infection and refusal to feed.  At this point Joseph was having to be tube fed through his nose via a NG tube, he was being tested and treated for heart problems and encephalitis, he had to have a lumber puncture, EEG (brain test to check for abnormal brain activity) and multiple blood tests including many blood gas tests as his CO2 level was unusually high.  Doctors also discovered that Joseph had an irregular breathing pattern.  After two weeks of tests which Joseph took in his stride, he was transferred to the Great North Children’s Hospital, in Newcastle for specialist treatment where he spent a further six weeks undergoing more tests including an MRI Scan, Doctors there discovered that he was also suffering from epileptic seizures.  Throughout all of this, Joseph never complained, he was such a fighter with a huge heart who faced up to every battle without a whimper.  We managed to get Joseph home in December 2011 after he had become stabilised and he spent a happy Christmas at home with his family.  After another two short spells in hospital in early 2012, we were delivered the devastating news that one of the blood tests had come back as a match for a very severe genetic condition called MeCP2 which is part of the RETT family, this meant Joseph had a vast range of disabilities and both myself and Janine, after the initial shock decided to focus on all of the positives.  We both wanted to give Joseph the best life possible, we both went part-time at work so we could spend as much quality time with Joseph and continue with is 24/7 care.  We managed to enjoy a lovely family holiday in the Lakes, Joseph also enjoyed his weekly physio and portage sessions, as well as going to Sunningdale School where he had some great times. 

We had gained a lot of knowledge about Joseph’s condition and we tried everything possible to give Joseph the best chance of survival until a cure could be found, but unfortunately in October Joseph had a bad episode which put him back into hospital on a ventilator, after initial tests we were told that Joseph didn’t have any chance of living without the ventilator so we took the heart breaking decision to turn the ventilator off, we would never have let him suffer and our beautiful, precious boy with a huge heart fell asleep on October 12th aged 16 months.

He was such an inspiration to everyone who met him and we were so proud to be able to call him our son, even though he was only with us for a short time, he taught us a lot about the important things in life.  We will miss him immensely and he will never be forgotten, he touched the hearts of so many people and will continue to do so for a long time.

Darren & Janine