d-a-d 3Speak Podcast

https://3speak.tv/watch?v=d-a-d/emhivpuqjd
Over the past year, we’ve found UNO to be a great distraction from hospital waiting rooms and lengthy delays in various procedures. It’s been a source of immense laughter and helped in times of tension.

I think the title says it all!!

https://3speak.tv/watch?v=d-a-d/hfuwcqbu
Unfortunately for long term steroid users, bones can quickly become weak, and for a child with Duchenne muscular destrophy, this can easily lead to breakages. For a child with DMD, not walking, or using muscles, for a significant amount of time, such as occurs after breaking a leg, can lead to hastened inability to walk.

To avoid this from happenning, bone infusions can be given in an effort to help strengthen the bones. The problem is, the procedure can be quite daunting.

This is an account of my sons trip to the day unit for his first infusion. He was super brave.

https://3speak.tv/watch?v=d-a-d/zpigoqgp
A video that skips from idea to idea a little, however, the primary focus is the idea that a child with DMD is difficult to benchmark. Just like when you're measuring a childs growth, you can have an idea of where they should be, but you cannot know for sure as each child grows at different rates. So to, is true for a child with DMD. There are benchmarks that indicate how muscle weakening may progress, but it's always different from child to child.

https://3speak.tv/watch?v=d-a-d/hkdtjkej
One thing we really noticed was that after the diagnosis, the number of appointemtns we were suddenly required to attend increased exponentially. Before the diagnosis, Dominic presented as a generally healthy child and we only took him to the doctors when he needed to go. Upon discovering he has DMD, we were faced with the reality that he was now required to attend a large number of various specialist and health appointments over a calendar year.

The number of appointments he needs to attend vary, depending on what is going on, but currently, there's about 7 annual appointments he need with specialists, plas weekly and fortnightly support from physio's and other therapists. These don''t include the support he gets from his school as well.

As the condition worsens, we'll likely need to double the number of appointments as he'll need to attend twice a year, rather than the current once a year.

I'm so grateful, however, for the professionals who are getting around him and supporting his needs. No doubt, without them, quality of life would be much less than it is. It makes me wonder how people who live in less ofrtunate countries manage this condition, and makes me want to raise awareness of it all the more.

https://3speak.tv/watch?v=d-a-d/jlarxgyl
Every year on the 7th of September, the global Duchenne community come together to help raise awareness of Duchenne muscular dystrophy. The 7th of September is symbolic of the number of exons in the dystrophin gene - 79. The dystrophin gene is the one that is mutated and causes DMD.

To help raise awareness one of the things we can do is ask local landmarks illuminate red. This year, we were lucky enough to have Adelaide Oval, Adelaide Town Hall and Parliament House light up red in recognition of the day.

79 Exons, the charity I founded last year was able to provide our son's class-mates with a small gift to remind them of the significance of the day.

https://3speak.tv/watch?v=d-a-d/cpovdsvd
When you have a child with Duchenne muscular dystrophy, there are rarely any good decisions to be made. Each decision you need to make comes with good and bad sides, or often, bad and worse sides.

Steroids, for example, can help with remaining ambulant for longer and they can greatly reduce the risk of scoliosis, however, long term steroid use can weaken bones. This means that patients who use steroids are more likely to break a bone, and if it's a leg, then the long period of immobility that ensues, can also stop them from walking, so as you can see, the only drug available to give 'benefits', can also be the undoing of all the hard work.

Decisions are not easy when you have a child with DMD. You're always weighing up the options and hoping that, in the moment, you're making the right choice.

https://3speak.tv/watch?v=d-a-d/ekqropns
In 2022 we found out that out son had Duchenne muscular dystrophy. It hit us hard. Harder than we ever expected. In the eighteen months since this revelation, we've already gone on a learning journey that should really have taken a lifetime.

This is the start of a new journey - one where I hope to share the highs and lows of having a child with Duchenne muscular dystrophy. Despite the ever-lasting niggle that constantly tells me that this condition will forever effect our family, I can't help but think that being given the opportunity to be the parent of a child with DMD is a privilege.

In this first episode, you'll find a brief recap of the couple of agonising weeks we spent waiting to find out if our son did have DMD. As well as some brief details of how we've adjusted to living with this life-limiting illness.