“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. The network of blood vessels in scans take the appearance of little puffs of smoke, and moyamoya is the Japanese translation for this. 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 hearts 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, free ‘Home from Home’ accommodation run by The Sick Children’s Trust. We were delighted! 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. Knowing what our son was about to go through, Wendy and I wanted to keep busy. It was a blessing in disguise that we’d actually forgotten a few bits and bobs like Wendy’s toiletry bag with all her contact lenses. A nurse also mentioned that we may want to get Riley some button up pyjamas as his head would be sore and covered in bandages – which we hadn’t even thought of. When we were in Leeds centre, 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. ” Dad Chris Watkins
“Eckersley House has meant so much to us from the minute we received that call to this moment right now. We were welcomed by the Assistant House Manager, Fiona, who was so friendly and chatty. She welcomed us into the house and told us all about what The Sick Children’s Trust does and we were amazed at the support it gives families with seriously ill children in hospital. For the first time in two days, I felt calm and relaxed talking to Fiona knowing Chris had somewhere to stay. We didn’t have to worry anymore about Chris being 20 minutes away in a hotel – he would be in a lovely, warm ‘Home from Home’ just by the hospital. It was a huge relief. Over six hours later, Riley was out of surgery and although he was still sleepy at least we were with him. We both stayed on the ward until late in the night and Chris only had to pop over the road to Eckersley House to get some sleep – which he worked out was just a three and a half minute walk! If anything happened in the night, I could just call him and he’d be by our side in no time at all which was extremely comforting.
“Over the next couple of days following his surgery, Riley really was not himself. He was incredibly down and not talking. It was like he was in a mood with us. We wondered what we could do to cheer him up, so Chris spoke to Jane at Eckersley House about whether his Mum and Noah could stay over in his room one night. The answer was yes and it was the best medicine for Riley. 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. It came as such a surprise that before we made the drive back to Hull, we popped into Eckersley House to gather our thoughts while Noah proudly showed Riley around his ‘Home from 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. Chris stayed at the house again, while I slept by Riley’s side which he really needed. We would fall asleep holding hands. And I could get some sleep on the ward because I knew that Chris wasn’t far away. ” Mum Wendy Watkins
“Eckersley House has had such a positive impact in a time that has been so hard. In the lead up to Riley’s second operation, Noah began to feel unwell and become anxious, we think because he knew what was happening to Riley this time around. While separated from Riley, Noah didn’t seem to get better. But on the day he arrived at Eckersley House and saw his brother he was fine. His mood just kept improving.
“It was reassuring going back to Eckersley House. Returning to a place where there were friendly faces to chat to, who genuinely cared about our family meant so. The team there were so helpful “too. Although at home I do a lot of the cooking and cleaning, the one thing I don’t tend to do is the “laundry! It was no trouble at all to the Eckersley House team who helped me sort out the washing. It may seem like such a little thing but it really took away a stress of mine.
“Every time we opened the door to Eckersley House, one of the team would ask how we were and how Riley was doing. They genuinely cared and that just shone through every time.
“Riley’s recovery from the second operation went really well, despite a nine hour surgery this time. We have been home for a few weeks now, and both the boys have since been back in hospital with a serious bout of tonsillitis – but they’re resilient and strong!
“We have to wait until the autumn to see if Riley’s operations have worked. Riley continues to experience TIAs, though sometimes it’s impossible to know if he’s having one. He also has gelastic seizures every now and then which are spontaneous giggling episodes, a result of his tumour. They can be extremely unnerving, especially in the middle of the night, as it’s not your jolly type of laugh!
“I have recently set up my 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.”
Dad Chris Watkins