The changes to the London Marathon this year have been incredible for me. This is my first time running it and, having only been running for three years, this would be a huge achievement for me. My only concern would be not having my son, Hugo, there to cheer me on.
Before Hugo was born, we knew from some of the scans that he would need an operation on his heart. It was difficult news to hear but the at the time, the doctors were confident that they could deal with the problem. Two months later, this got much worse and the doctors decided he would need to have surgery as soon as he was born. Thankfully, Great Ormond Street Hospital is a world leader in heart surgery, and they didn’t think it would affect him in any other way.
When he was born, things changed dramatically. At 24 hours old, he was whisked off to Great Ormond Street Hospital. The hospital staff where I was were aware that he didn’t look or behave as he should but decided not to tell us until we reached Great Ormond Street. I am very grateful for that 24-hour bubble of bliss. When we saw him next, he was covered in wires and tubes. At 4 days old, he had his first heart surgery, which failed. It was at that time we were given the diagnosis of CHARGE syndrome.
CHARGE syndrome is a rare genetic disorder that affects many different parts of the body. It is incredibly complex and affects everyone differently. The diagnosis was scary but at the time, there was so much to think about. The failed heart surgery had impacted Hugo’s breathing and he had to stay in intensive care. It took 12 weeks for the incredible team at Great Ormond Street to find out what was happening and rectify it with more surgery.
At 5 months old, we could finally take our baby boy home. It was at this point we started talking to a man from the CHARGE family support group. He started telling us about Sense and all the ways they could help us but at that point, we just wanted to spend time with Hugo. That period was very difficult but really, we didn’t know better as he was our first child. Eventually, we made it down to one of the Sense Family Days and everything changed!
Support from Sense
It was amazing seeing so many other families in a similar position to us and the staff new exactly how to support Hugo. Over the years, we have tried to go to as many as possible. Hugo started going to hydrotherapy sessions in Market Deeping, we would attend Christmas days and various activity days. Soon, Hugo had his own Intervenor to support him with his communication.
Sense have always been a huge advocate for Hugo, ensuring that he received the right level of support at school. There has been so much support over the years and it is the one thing that has remained constant.
We have been shielding now since March, meaning that if the London Marathon had taken place on the original date, I would not have been able to participate. Hugo doesn’t like busy environments which would have meant that he would not be able to meet me at the finish line for this achievement.
Now the event is virtual on the 4th of October, Hugo can be there on the side lines cheering. Not only that, I am excited to attempt the run on my birthday! For me, the London Marathon is more than a challenge. It is a personal goal I have set. It is a chance to raise money and awareness for an organisation that has always been there for us and it is a chance for Hugo to take part in something he otherwise would not be able to.