Our identical twin boys, Riley and Noah are inseparable. They do everything together. But earlier this year, Riley was admitted to Leeds General Infirmary (LGI) for two major brain surgeries which meant for the first time in their lives they were apart. But thankfully, Eckersley House made sure they weren’t apart for long.
Riley has moyamoya disease which is believed to effect just one in a million people in the UK. Moyamoya blocks the two main blood vessels that supply blood to the brain and it compensates for the lack of blood supply by developing a network of blood vessels. Coupled with this he also has another rare condition called Hypothalamic Hamartoma – a tumour – which effects just one in 200,000 children.
One of the symptoms of moyamoya are mini-strokes (TIAs). The first one that Riley had was just after his fifth birthday when he was in the bath. I took him straight to our local hospital, the Royal Hull Infirmary, but they said there wasn’t anything neurologically wrong at that stage. Over the next couple of months, Riley continued to have further episodes and the doctors thought he had epilepsy. But my wife, Wendy, and I knew that this wasn’t the case. We knew in our heart of hearts that this wasn’t the right diagnosis.
We were right. A scan revealed that Riley had moyamoya disease but our hospital wasn’t equipped to cope with it so we were referred to LGI for an angiogram. The results were devastating. The entire right side of Riley’s brain was blocked and he needed an operation as soon as possible because the other side of his brain would be blocked within a year. It didn’t take much to work out what the outcome would be for our son if the operation didn’t go ahead.
We had to wait a month for the surgery. As we played the waiting game and tried to comfort our children, including our youngest Jessica, we also had to figure out the logistics of how Wendy and I could both be close to Riley while he was in hospital. Some friends encouraged us to speak to the hospital about what support was available and this is when we were told about Eckersley House, We made a call to the House Manager, Jane, who was very empathic to our situation but explained that they don’t book in families as there is such a high demand for the rooms that there’s a waiting list. With 23 bedrooms, Eckersley House was completely full.
We arrived at LGI the day before Riley’s surgery. It was extremely stressful. We had to find a parking space, which seemed like an impossible task so I dropped Wendy and Riley off at the entrance but it was an hour before I found a space which meant I missed all the information from the doctors. I was really stressed at that point, I just wanted to be with my son. That night, I stayed in a hotel while Wendy slept by Riley’s bedside. It was a 20 minute drive from LGI and it wasn’t cosy, homely or comforting. But I’d do anything to be close to my wife and Riley. I booked for the week, thinking that there would be little chance we’d reach the top of the waiting list for Eckersley House.
The following day, we gave Riley a big hug before he went into theatre. The doctors were performing a risky surgery known as an extracranial-intracranial bypass where healthy blood vessels would be used to bypass the right hand side blockage to provide additional blood supply to the areas of the brain which had been deprived of blood. While Riley was in surgery we received a call from a local number and our reaction was immediate panic. Thankfully, to our relief, it was Jane from Eckersley House. There was a room for us.
Over the next couple of days following his surgery, Riley really was not himself. He was incredibly down and not talking. When Noah walked onto the ward, Riley completely changed! He perked up, had a smile from ear to ear and was even laughing – it was such a change which was wonderful to see. The boys stayed together all day, playing, chatting and having fun. It was the best thing to come out of those days in hospital. Riley really needed his brother at that time which was only possible because of Eckersley House.
We honestly believe that because Noah could stay at Eckersley House and be there for his brother, Riley’s recovery was so much quicker. We imagined that we’d be in hospital for well over a week, but just four days after his operation, Riley was allowed home.
After being home for a couple of months, Riley needed to go back to LGI for the same operation on the left side of his brain. But this time it was a lot less stressful. We encouraged Riley, and Noah, to remember the fun times. Like the magician who came around the wards, or the scouts who came to do activities and the playroom filled with so many toys! This meant that the boys saw going back to Leeds as an adventure.
Once again, Eckersley House supported us during this time which we couldn’t be more thankful for.
We have recently set up our own charity, Life of Riley Appeal, to raise funds as Riley may need specialist surgery in America to remove the tumour. It could cost £240,000. We’re hopeful that it won’t be necessary. If that’s the case, the money we have raised so far will go towards ward 52 which cared for Riley and The Sick Children’s Trust’s Eckersley House, which has become a huge part of our lives.
Chris and Wendy Watkins