Ever since Hugo was diagnosed, we’ve been in contact with various other ‘Duchenne’ families, mainly through social media. This was incredibly helpful at the start and I got to talk to a few other parents who have gone through the hell of those first few months. However, now the dust is settling a bit, my priorities have changed, my outlook has changed, and my way of dealing with Duchenne has changed.
I’m incredibly grateful for the support we had throughout those early days, but things are different now. At first, we didn’t know anything about this condition, we didn’t know what to expect, and we had no idea what the hell we were supposed to do. However, we’ve now done our own research, we’ve spoke to our consultant many times and we feel that the information we have gathered about Duchenne is sufficient to enable us to make important decisions about Hugo’s care.
As things stand at the moment, my main priority is ensuring Hugo has a happy life which is stress-free and enriched with memories. He has plenty of hospital appointments as it is, so I steer well out of the way of ‘creating’ any additional unnecessary appointments for him. I don’t want him to get to his 20s and have a bank of memories which only involve hospital appointments. For this reason, getting Hugo onto a clinical trial really isn’t a priority for me. We had an in-depth conversation with our consultant about the pros and cons of clinical trials. Whilst they are great for paving the way for new treatments, there are many downsides. They involve frequent travel to hospitals in far away big cities, they involve many procedures such as muscle biopsies and blood tests, and you don’t even know if they are on the real drug or the placebo drug. There is always the risk of severe side effects of the drug as they are in the ‘testing’ process and the professionals don’t even know themselves if these drugs are even effective.
Throughout this Duchenne journey, we also have to bear in mind that we have another two children. We have to consider them in all our decisions regarding Hugo. We need to make sure they also have a childhood to remember, they don’t want to be missing out on our vital time if we are traveling to and from hospitals for a clinical trial. The majority of these trials involve weekly or monthly check ups, some with frequent overnight stays for monitoring. I don’t think that’s fair on any of the boys, and frankly I don’t want to miss out on any time that could be spent making memories.
Our choice of hospital for Hugo’s specialist care wasn’t taken lightly either. For a long time we considered transferring to GOSH but after lengthy discussions and research, we decided that actually Nottingham was meeting all of our needs and there was no benefit in transferring.
I’ve been part of a ‘duchenne community group’ on Facebook for the past few months. In the early days, it was a great help, but just lately it has done nothing but make me question every single decision we make. It’s a bit like mother and toddler groups. There is a constant feeling of ‘competition’, a bit like who’s breastfed the longest, who’s baby sleeps the best, who makes the best ‘pureed’ food for their baby, who’s baby walks first. Just like babies, Duchenne children have their own path and their own way of doing things, the feeling of having to ‘pretend’ to fit in with people is just not for me, and I hate nothing more than being ‘compared’. The people on this group were constantly posting about which hospitals are the ‘best’, all they do is research every single possible thing about the condition, and spend their entire life ‘searching’ for a clinical trial for their child. That’s fine, that’s their way of dealing with it and that’s not what I have a problem with, I respect them for their decisions. The problem I had was the constant need for some of these people to ‘prove’ that they are doing the best for their child and make everyone else feel inadequate. We are all doing the best, we are all suffering and we are all stuck on this Duchenne journey wishing so badly that we weren’t. However, making people feel that they aren’t doing their best because they aren’t at the ‘best’ hospital, or they aren’t desperately trying to find a clinical trial made me realise that I need to deal with this journey in my own way.
I have taken a break from the Duchenne community. Danny and I are more than capable of making informed decisions on how to move forward with Hugo and I was becoming fed up of being influenced by people who, quite frankly, don’t know any more than us. The opinionated competition was dragging me down and it’s not something I want to be a part of while it’s like that. Of course, I will do anything and everything for Hugo, but I am not prepared to spend his short life searching for something that realistically won’t happen. A miracle cure for this condition may happen one day but I genuinely believe it won’t happen in time for Hugo’s generation. Perhaps that is perceived as negative, but I see it as realistic. I would rather prepare myself for the worst so that if a miracle cure does happen, it will be amazing. If that miracle cure doesn’t happen, at least I won’t be left feeling like I’ve wasted Hugo’s life for nothing. To me, that is positive. The here and now is what counts.