"Ryley was a fit and healthy 14-year-old lad. He loved sport and ran competitively for a local athletics club, played football for a local team and was in the school athletics, football, and rugby teams. He was also a very clever lad attending our local grammar school in the top sets hoping to study law at university after his A levels.
During the winter of 2015 Ryley trained hard in hope to get into the county team for sprinting and started the season well in May 2016, winning the county championships at 100m with a personal best and was looking forward to the track season ahead.
Unfortunately the following week our lives changed. It was a Friday evening Ryley returned home from school got changed and raced off to our local village park to play football with his friends. Later that evening Ryley took a shower and it was then he shouted out he had a headache. Within minutes he collapsed was unconscious and vomiting violently. The rest is very much a blur to us now.
He was rushed to our local hospital where we were told he had a massive bleed on his brain and needed emergency surgery. We could not understand why or how. We were told he needed to be transferred to Addenbrookes although they said he may not make the journey, but they wanted to give him that chance. That journey was the longest of my life, being in the front of the ambulance not knowing if my son was still alive in the back.
On arrival, Ryley was taken away and I was not permitted to follow. I remember the doctor that had travelled with him sitting beside me crying and I thought if she’s crying too then there’s not much hope. Scans revealed a massive cerebral haemorrhage with an underlying AVM and left septal haematoma. He had neuro surgery to evacuate the haematoma and a craniotomy. Ryley was put into an induced coma to allow his brain to recover. After a week or so they gradually reduced his medication, but he did not wake up and it was then a tracheostomy was fitted. You hear many stories of people awaking from comas and talking, smiling responding to sounds but this was not the case with Ryley. It was a very gradual stage of awareness I liken it to having a new born.
On arrival, Ryley was taken away and I was not permitted to follow. I remember the doctor that had travelled with him sitting beside me crying and I thought if she’s crying too then there’s not much hope. Scans revealed a massive cerebral haemorrhage with an underlying AVM and left septal haematoma. He had neuro surgery to evacuate the haematoma and a craniotomy. Ryley was put into an induced coma to allow his brain to recover. After a week or so they gradually reduced his medication, but he did not wake up and it was then a tracheostomy was fitted. You hear many stories of people awaking from comas and talking, smiling responding to sounds but this was not the case with Ryley. It was a very gradual stage of awareness I liken it to having a new born.
He spent 4 weeks in PICU before moving to a ward, he was still unresponsive I had no idea if my gorgeous boy was still in there. In July Ryley had his tracheostomy removed and a gastrostomy inserted. One evening in July we had a massive breakthrough I saw him raise his eyebrows I quickly homed in on this and explained to him he could use this communicate raise up for yes scowl for no. He picked up on this quickly and after asking him questions I discovered he was in there he knew who he was, where he lived what school he attended, and the list goes on. I cannot believe the sense of relief I felt nothing else mattered from then on.
The neurologist explained to us that scans showed permanent damage to his brain due to a prolonged period of oxygen starvation. This was in the area of the brain that affected his movement and mobility, so it was likely he would be a long-term wheelchair user and we would have to think about making adaptations to our house. I could cope with this although my response was that we’d just have to train for the Paralympics now.
We spent 3 months in hospital, before moving to a lovely ‘home from home’ nurse led care home for a further three months, whilst waiting for a place at The Children’s Trust in Surrey for intensive rehabilitation. It was here Ryley began to use a spell board to communicate and began to learn how to eat solids again. His voice also improved slightly, and he could say the odd word. Physios, speech therapists and OTs visited daily and Ryley worked so hard. It also became evident that he had not lost his wicked sense of humour!
In October 2016 we returned to Addenbrookes for surgery to remove the AVM and fit a titanium plate to his skull. Ryley was quite excited to become ‘Ironman’. In November we moved down to The Children’s Trust in Tadworth for a 4-month intense rehab programme. Again, Ryley worked hard and although he was plagued with chronic fatigue, much of it brought on by the medications being taken to reduce his severe upper body dystonia, it was here that he was given an electronic communication system. Once he learnt how to use this there was no stopping him! He often had the staff in fits of laughter with his jokes and ‘banter’. Everyone who worked with embraced this and were astonished by his acceptance of his injury.
Finally, in March 2017 after 10 months away we returned home. He was so happy to be home and it has been since his return he has made the biggest progress. I don’t want to dwell on any negatives here and yes there have been many battles and still many ongoing ( education/house adaptations/ equipment etc) but I want people to read this story and draw strength and hope from Ryley’s journey.
We have been blessed by our friends and local community who supported Ryley by fundraising to enable him to continue with specialist neuro Physio, which was not funded by our Local Authority. We travel an hour each way every week to take him and he also attends a local gym weekly to build his core strength. He hopes to achieve his goal of walking unaided. He has joined a Boccia club and enjoys the social side of meeting others with disabilities. In July his gastrostomy was removed and he came off all medication this has helped immensely to reduce his chronic fatigue.
Ryley now has a powered wheelchair, which has given him a bit of independence back. He continues to use an electronic communication system although mainly for when he tires and is plagued by the frustrating dystonia, but he never complains or moans if he feels sad then we find something to laugh about.
He has lost so much but we concentrate on what he CAN do not what he can’t. We focus on the positives as Ryley still has a long way to go and so much more to give. Ryley’s goal for next year is to give running competitively in races a try, so he can get back on the track and run like the wind again.
Christmas this year is about being home around the ones we love most and eating lots of yummy food now that he can.”
Mel- Ryley’s Mum
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