I actually feel honoured to be running for this smaller charity. Ryan’s Story makes me 😭 & I am gonna do my best to train & finish this half Marathon & raise awareness 💙

RYAN’S STORY

Ryan was born on the 7th August 2008 and, for a while, he seemed like any other little boy. At nine months old, back in May 2009, Ryan was a happy little boy - starting teething, able to stand up with little support and rolling around everywhere - just like most babies his age.

We could never have imagined what was hiding around the corner!

Ryan caught the Norovirus bug and was admitted into our local hospital, the Royal Lancaster Infirmary (RLI), on the 5th May 2009 for dehydration because he could not keep anything down.

He was discharged a few days later and everything started to go back to normal then on the following Saturday, Ryan had his first seizure. Ryan was rushed back into hospital via resus in the A & E department - his first seizure lasting one hour. He remained an inpatient for two weeks whilst they carried out EEG's, a CT scan, an MRI scan and several blood tests. He also lost his vision for up to four days following this seizure.

He had not suffered any further seizures during this time and was discharged exactly two weeks later.

Unfortunately, that same night he was discharged, Ryan suffered his second seizure and we rushed him back into hospital. This time, they could not stop it.

The doctors tried everything they could to stop them but eventually had to put Ryan into an induced coma and transfer him down to Royal Manchester Children's Hospital at Pendlebury, into intensive care.

The intensivists at Manchester do not think Ryan stopped fitting from the Saturday night until sometime on the Monday and he remained in intensive care for nine days. As soon as he came out of the coma, everybody noticed Ryan doing lots of twitches all the time (up to 20 hours a day at his worst) and nobody could understand why he was doing it. I felt that he was having epileptic fits but the nurses caring for him in intensive care kept telling me he had the hiccups but I just knew that they were wrong.

He would not drink his bottle, wasn't moving about as before and could not support his own head - it would flop over if you weren't supporting it.

During our three month stay in hospital, Ryan's case was discussed amongst many clinical professionals (even in America) and he had many tests - many EEG's, MRI scans, blood tests (of which the Mitochondrial Research Group at Newcastle were testing), skin biopsy, a VER (Visual Evoked Response), an ERG (Electro Retina Gram), an upper and lower limb SSEP (Somata-Sensory Evoked Potentials) and an ultrasound scan. He was fed via an NG tube (nasogastric) for a period of time and was not really interested in any solid food.

In September 2009, Ryan had a gastrostomy operation which enabled him to be fed directly into his stomach. Ryan was blessed with an amazing team of consultants and specialists, both in Lancaster, Manchester and Newcastle - and whilst I do not want to name them personally without their permission, they know who they are and we shall be forever grateful to them all for everything they have done for us.

Had this team not been involved in the care of Ryan, we believe that Ryan would probably not have been with us for as long as he was. The diagnosis was devastating but at least we could make the most of the time that we had left with our son and were not trekking backwards and forwards to the hospital all the time.

We brought Ryan home from hospital at the end of July 2009, his twitching reduced considerably however he did have days where it could get quite bad, he was never able to talk, walk or move around like most children his age and could not hold his own head up but he could still see, laugh and smile. He was also able to spontaneously move his legs and arms but not "to demand".

Ryan suffered a slight setback when he fell ill with bronchiolitus, followed by a perforated ear drum - both in the first week of December 2009. It took him 6-8 weeks to recover fully from this until he got back to his smiley, happy self again which was great to see!

After that, Ryan developed his own personality – he loved being sat of your knee all day getting ALL

the attention, giggled when he was tickled and gave really big grins whenever you pulled him close for a cuddle! He loved watching his cartoons and Disney films, having books read to him and having nursery rhymes sung to him.

He also learnt that if he cried his “inconsolable cry”, he would always get picked up and cuddled. He was very aware that this would get him all the attention he wanted.

Developmentally, he was extremely behind with his teething and I think it was so much more of an issue than a “normal” child because he did not bite down on any food, teethers, dummy etc.

January 2011, Ryan had just cut his 6th tooth with 2 or 3 others about to cut – I spoke to a couple I know who have a little boy about 2-3 weeks older than Ryan and I was told that he had a full set of teeth with the exception of 1!!

Ryan suffered a significant deterioration on the 24th April 2011 – he really didn’t look himself at all and I took him into Royal Lancaster Infirmary. On that first day, he was running short of oxygen and was given many epileptic drugs over the course of the Sunday and Monday to the extent that four of the doctors wanted to transfer Ryan back down to Royal Manchester Children’s Hospital in an induced coma. I must say that our feeling, as Ryan’s parents and full time carers, was that Ryan’s increased epileptic movements were probably just the new ‘acceptable norm’ for Ryan and that we did not want him to go through all of this. Thankfully, a source from RMCH supported us that this was probably a significant deterioration therefore inducing into a coma would not achieve anything.

She actually remembered Ryan from two years previous. Unfortunately Ryan’s deterioration meant that he lost his vision, he didn’t laugh or cry anymore, he rarely smiled and when he did, it only showed on one side of his face and this usually only occurred when he was having a more significant epileptic abnormality. We were extremely happy that although he never regained these responses, he did stabilise again for quite some time and did not generally show that he was in any pain.

Gradually over time, Ryan began picking up pneumonia or a nasty chest infection more and more often until it actually became less frightening in some respects because we knew he had faught everything off before and recovered from it. It would take something quite substantial to concern us by this stage. There were many times that we were caring for Ryan at home at extreme levels but we were absolutely fine with this, it was actually our choice when we could provide Ryan with the same or better level of treatment and care yet avoiding the risk of picking up other bugs whilst he was already so unwell. We also found that Ryan began requiring more and more suctioning in order to try and clear his secretions without them settling on his chest and incurring further infections.

Our upmost priority was to ensure that all the decisions which we were making were in Ryan’s best interests. He was swimming at a hydrotherapy pool 2-3 times a week, having loads and loads of cuddles and music time, he had upbeat music for the day-time, Michael Buble for showering and a combination of audiobooks, Nick Lachey, Jai McDowall and generally softer music for the many, many hours he lay awake during the night. We took Ryan on mini breaks within the UK literally all the time and wherever we went, we always got consent beforehand for Ryan to be allowed in the Jacuzzi and if we didn’t get that consent, we would go somewhere else. Ryan also came abroad on holiday with us twice – 2 weeks in Santorini to attend our friend’s wedding and 10 days in Menorca.

On Spring Bank Holiday Monday, 25th May 2015, Ryan began showing a significant amount of bright red blood in his urine. We immediately took him down to the children’s ward assessment unit and extensive investigation work began. Over the course of the next couple of weeks or so, Ryan had blood tests, urine samples, chest x-rays, a renal ultrasound and a CT scan and had ruled out some alarming possibilities however we knew that this was going to be another growing concern in the future although it was not thought to be immediately life threatening.

Ryan began showing signs of a further chest infection on Sunday 21st June 2015 and hospital input was received. Unexpectedly Ryan sadly passed away very peacefully but suddenly on Tuesday 23rd June 2015 at the Royal Lancaster Infirmary, aged 6 years 10 months, from pneumonia secondary to Alpers Syndrome.

We always knew that at some point in the future, Ryan’s condition would deteriorate to a point where his body was no longer capable of retaining his life and whilst we feel that our lives can never be the same again and that part of us has died with Ryan, we are also so grateful that we have been able to enjoy Ryan for all of his 6 years 10 months – something which we value so much after hearing so many horrific stories from other Alpers families who have had their child stolen so much more quickly...

Loved with a love beyond telling, missed with a grief beyond tears.