I cannot believe what a amazing summer we have had, first with the Olympics and then the Paralympics. We were extremely blessed to be given tickets for the Paralympics by muscle dreams, an amazing charity set up by a man who suffers from limb girdle muscular dystrophy to provide unforgettable experiences for children suffering from muscular dystrophy. The games were incredible, the atmosphere was one that I simple cannot describe and will never forget. It was also fantastic to be around other families with children with different forms of muscular dystrophy and not have to explain Declan’s condition or that he is cognitively ‘normal’. We went to the games on the Sunday and then travelled to the other side of London the following day for what may possibly be the greatest moment of Declan’s life.
Back in December whilst staying at rainbows children’s hospice, a member of staff mentioned the ‘Well Child Awards’. The name obviously threw me but she explained it was actually a charity that helps disabled children which also holds inspiration awards once a year. The night before this conversation Declan had started crying, when I asked why, as he was now through his surgery and although it was very slow he was recovering, he explained that he is worried that when he dies I will be left alone, without him. Hearing this broke my heart but highlighted the kind heart and thoughtfulness of my amazing son, so when the nurse mentioned the awards I knew that I needed to nominate Declan. My reasons were that although he has this horrible condition that deprives him of so much and will cut his life short, he continues to make myself and everyone around him smile.
He moans just like every other normal 13 year old, but never about his condition or what he can’t do. He is by far the bravest person I know and although his muscles may be weak he is incredibly strong. To be 13 and live every day not being able to actually care for yourself, seeing your friends become more independent, have girlfriends and know that you will never work, have a family or potentially make your 20’s must be so painful, but that smile covers all those thoughts up. My brother and my other brothers girlfriend also nominated Declan for the inspiration child award, and to our delight he won.
I was informed about this a few months ago, and shortly after we did some filming for the presentation. I had been in contact with the agent of Declan’s favourite celebrity Russell Howard for a while about a meet and greet, and when I informed them about this award it seemed like a great time for Declan to meet Russell. Who better to present him with the award. A week before the awards I found out Prince Harry would be there which made the whole affair even more exciting.
So off we drove to the hotel, only to park outside and find two massive steps and a lift that even a pushchair couldn’t fit into. This was at 1.00pm and the awards were at 4.30pm. I rang Well Child and they were furious as the hotel assured them it was wheelchair friendly, it was a simple reminder of the little things that crop up that highlight to Declan that he is disabled. We were told to go to the hotel where the awards were being held so that they could ring around various hotels. On our arrival at Park Lane we were all blown away by the hotel, although Declan was more impressed by the cars parked outside.
It was then we were informed that we were now going to stay at the five star hotel, I couldn’t believe it. I asked the Well Child coordinator if Declan would actually be able to talk to Russell Howard and was told he would actually be sitting at our table, this was a tearful moment, as I knew Declan would be so made up by sitting next to his idol. At this point Declan didn’t know who was presenting him with the award and I kept teasing him about who it might be. At 4.30pm all suited and booted we headed down to the VIP room where all the winners would meet Prince Harry. It was fantastic to meet the other winners, they had all won inspiration child awards but were of various ages.
I have never been in a room full of such incredible children and proud parents. When the Prince first walked in I never even noticed as he was so ‘normal’. He worked his way around the room meeting everyone. I think I was more nervous than Declan as he is so laid back. The Prince showed a real interest in Declan and why he had won the award, although Declan was more interested in what car he drives. I think at that moment I met a real gentleman, who we should all be honoured to have as a Prince of our country. Following our meeting with the Prince we went into the ball room where the awards were being held, this is where Declan meet Russell, there isn’t a photographer in the world that could have captured Declan’s surprise and delight. At first they both were quite shy so I broke the ice, yes a stand up comedian can be shy!! Once the ice was broken they were like two peas in a pod, giggling at Gillian Maketh for her outburst on I’m A Celebrity, she was presenting an award, and laughing about Russell’s infected finger and how when he signed autographs his writing was like that of a three year old. Russell was meant to leave at 8.00pm but cancelled and postponed his taxi for an hour as he was having such a great time, he has also made a date to take Declan to Nandos.
After the award many people wanted to come over and congratulate Declan and tell them how inspired they are by his story. One of the people on the nomination panel came over and wanted to share with me why they had chosen Declan. The reasons were that they had never seen such a bond between a mother and son and how beautifully we worked together on a daily basis to manage Declan’s condition and what life throws at us. She also said that she had never seen such a genuine smile on someone’s face and that Declan is a true inspiration. My heart sang with her kind, heartfelt words. I’m smiling just thinking about that amazing night, a night truly deserved by Declan. Later on that evening I received a text message from Russell Howard telling me what a pleasure it was to meet us and what a lovely relationship Declan and I have. He has kept to his word and is in regular contact to see how his new mate is.
Even the sleep study Declan had the following night could not take away the buzz that he has from meeting Russell Howard. He says he has no idea why he won or why I nominated him, to him he is just a normal lad leading a normal life and that’s one of the things I love most about him, he never uses his condition to take advantage of situations and never moans.
I won’t end this diary on anything negative that has also happened since the last diary as I just want to focus on the most amazing time we had in London and how blessed I am to have the bravest young man as my special son.
Congratulations Declan from us here at the yston Town News on your award, you look fabulous in the picture above and on the TV. A truly well deserved recipient of this award and something you and your family will treasure.