* Riley Anthony Jones *
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Born: Sunday 18th December 2011
Died: Sunday 9th December 2012
Age: 11 Months

My beautiful baby boy Riley Anthony Jones was born on Sunday 18th December 2011.

To me he was a perfect little baby, beautiful smile, always laughing and loved watching his Happy Feet DVD. He even learnt to say “Mama’. However, we were concerned that Riley was progressing slowly as he didn’t seem to be able to hold his head, he couldn’t roll over and neither could he sit up without being supported.

On Saturday 4th August Riley had his first fit, We were unaware that it was a fit until the Doctors and Nurses at The Royal Victoria Infirmary (RVI) told us. He had been fitting continuously for 60 minutes. The Hospital carried out tests but couldn’t seem to find out what was causing him to fit. He had several scans, MRI scan, ECG scan, etc. He was discharged from the RVI on Friday 10th August 2012. He was only home for one night before having a seizure down the full left hand side of his body. He was re-admitted again to Hospital on Sunday 12th August 2012 and was discharged thirteen days later.

On Sunday 2nd September 2012 he had another seizure, this time down the right hand side of his body. He was admitted to the Intensive Care Dept where he was put into an induced coma and more tests were carried out.

On Friday 7th September 2012 Riley’s Consultant told us the devastating news that he had Alpers Disease (sometimes referred to as Alpers Syndrome). Alpers is a progressive degenerative disease of the central nervous systems that occurs mostly in infants and children. He informed us that it was a life limiting illness and estimated that Riley would only live for another two years. Riley was asleep in intensive care for a week and it took a further week for him to wake up. When he woke up he wasn’t well at all. He couldn’t say “Mama”, he couldn’t move his right side, but he could still give us the odd cheeky smile :-) After spending three weeks in Hospital Riley was allowed to leave Hospital and go home. He was on a lot of medication for his seizures and he had a NG tube for his milk and meds as it wasn’t safe for him to swallow.

On Sunday 4th November our beautiful boy was Christened. St Mary Cathedral in Newcastle City Centre was full to capacity. It was the best day ever.

On Friday 23rd November 2012 Riley spent the night in Hospital because he had problems with his breathing. He was discharged the next day.

Riley had to go back into hospital again on Sunday 25th November 2012. He was having seizures down the left side of his body and was having breathing difficulties. His Consultant explained to us that his illness was progressing at a far greater pace than previously anticipated and that it was only a matter of time. We decided to take him home on Thursday 6th December 2012 to be on the sofa where he could see everyone and everyone could see him.

Sadly, three days after leaving Hospital, during the early hours of Sunday 9th December 2012, our beautiful baby boy passed away at home surrounded by his family.

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