Wow, where do I even begin. I can’t actually believe an entire year has gone by since our entire world was crushed. I’ve been through every emotion possible since that day. At the time, it was a death sentence. Nothing in those first few weeks suggested there would ever be a light at the end of the tunnel. I still can’t fully put into words the pain I felt during that period of our lives. Nothing can ever prepare you for the news that one of your babies has a terminal illness. One which progresses with age, one which has no cure, one which will see his independence snatched away at the age when he should be experiencing the world. We’ve had to come to terms with the fact that Hugo will not have a normal life. We’ve all had to adapt to Hugo’s needs and face up to the terrifying future that lies ahead. He will never achieve the everyday things that we all expect our children to be able to do. Life literally changed for us overnight, and completely unexpectedly.
The worst thing about this condition is the absolute unawareness surrounding it. People do not know about Duchenne. People see a relatively normal child at a young age, like Hugo, and can’t understand the seriousness of it. Yes he may be a bit wobbly, he may walk a bit funny, but he doesn’t look like he has a terminal illness which will end his life in his 20s. People don’t know what’s around the corner for Hugo. Loss of total mobility at 10 years old, scoliosis, deteriorating lung and heart function in the teenage years, loss of arm and upper body strength by late teens, the inability to breathe independently by the age of 20, alongside the inability to eat solid food. By the time Hugo will be 20, he will rely on full time care and machines to keep him alive. Then, something as simple as a common cold could be too much for his fragile heart and lungs. And there is nothing we can do to stop it. How do you live with that?
Well, we have. We have got through possibly one of the toughest years of our life. And it’s been one hell of a journey! I am incredibly proud of Hugo, and the way Danny and I have dealt with it. It’s been incredibly difficult and at times, I’ve wanted to give everything up, but somehow we’ve done it. We have grown in strength as a family, we have learnt valuable lessons throughout the entire process, and we are 100% ready to battle everything that the rest of this journey throws at us. Hugo is the strongest, most determined, resilient child that I have ever met and I am lucky enough to call him my son. He really is one of a kind. He has shown us the true meaning of life and for that, I couldn’t be prouder. He has had to go through so many tests and procedures this year but he has tackled each and every one with a huge beaming smile on his face. He takes his medication like a pro, wears his splints without complaining and just gets on with it all. He is a true hero. He is kind, full of love, adores life, and is just amazing. Yes, he struggles with his autism, but behind that, he is the most caring and loving person who just brightens up everyone’s day. I wish I had only half of his qualities, he is simply wonderful. We are also incredibly lucky to have two other beautiful boys, who adore their brother and have adapted incredibly well to the whole situation. They understand Hugo has additional needs, they look out for him, they protect him. I was extremely concerned in the early days that this would have a massive impact on their lives too, but actually, they will grow up to be caring and considerate knowing what their brother has to go through. I literally am bursting with love and pride for each of them.
This year has been a whirlwind of crazy. Less than a year ago, we started Help4Hugo. We had an initial target of £500. We increased that to £1000 after a day. One day! We were absolutely blown away. We then bravely increased it to £10,000, never imagining we would get anywhere close to that amount. We hit that amount after 3 months! Hugo’s current total stands at just over £17,000. The love out there for our gorgeous boy is simply phenomenal. We’ve had massive support from friends, family and strangers from around the world. Money doesn’t make this better, but it goes a long way in securing an amazing life for Hugo and his brothers. Here are just a few organisations who have contributed to this outstanding figure (alongside such generous donations from family and friends):
Lincolnshire Police, Penfold Players, Kisimul School, Nat and Ali’s leaving party, Hayley’s 30th Birthday Party, Darren Darby Memorial Fund, Sue Darby cake sales, Cals tough mudder, the lads Lincoln to Skegness walk, Starglaze windows, Carly Gaffney photo shoot, Gellers Cafe in Market Rasen, Music with Mummy by Elain Bielby, Carrington Auction House, Jubilee Park Bowls Club, G4S, Nats coffee morning in Australia, Sarah Marwood Zumba, Emily Price body shop party, Lincoln Hospital union, Jules Jones and of course the Hearts4Hugo charity ball.
Reading through it all is just incredible. We will be forever grateful to everyone who has donated to Hugo’s fund because it is truly helping to make his life amazing. We have done some incredible things this year which we wouldn’t have been able to do without Hugo’s fund. We’ve been on holiday 3 times, we have been on amazing 3 day breaks to Legoland, Alton Towers, and Chessington world of adventures, and we’ve been on a magical Christmas train! We’ve made some wonderful family memories during a dark and difficult year.
Hugo’s diagnosis may have changed our lives, but the last year has given me plenty of time to reflect. It’s helped me to prioritise life. It’s made us enjoy quality family time together which we didn’t really do before. It’s made us appreciate every single day with our boys. It’s made us cherish every tiny moment. This diagnosis has transformed us into a strong family unit full of love.
Duchenne, you made our life incredibly shit for a long time, but we are better than you! Together with Hugo, we will fight it to the bitter end. Duchenne will not ruin our lives, it will make our lives. Life is what you make of it, and Hugo is the perfect example of that. He doesn’t let anything get in his way and we will be behind him for every step of this journey. One year on, we are feeling strong and ready to get through this.
Thank you to all our friends, work colleagues and family who have supported us through it, and believed in us. We wouldn’t be here today if it wasn’t for the kindness of each and every person in our lives. I genuinely didn’t think I would be able to see any positivity in this situation but it is by far outweighing the negatives right now. I no longer see Duchenne as a death sentence, I see it as something that has shaped our lives and made us who we are today.
Hugo, you are my true inspiration, a hero, and one of the best things that ever happened to me ❤️❤️❤️