Hi everyone, my name is Steve, but here I'll refer to myself as d-a-d, which is an acronym for Dad Against Duchenne. Eighteen months ago my son was diagnosed with a rare neuromuscular condition called Duchenne muscular dystrophy. Essentially, what this means, is that his muscles don't generate as the muscles of a healthy person do - they degenerate. That is, they don't build, but waste away. As an example, during exercise, muscles tear slightly and for a healthy person, as they repair, these small tears are replaced by more muscle, but for a person with DMD, the tears are replaced with useless fatty tissue. Because of this, most people with DMD will require full-time wheel chair use by around the age of 10 - 12.
I first discovered HIVE back when it was Steem around 2017 after a friend referred me. I joined back then, but was sporadic in posting and using the platform. I guess there wasn't really a great deal driving me to use it and mainstream social media still drew me with their handy apps, so I didn't engage with the community as well as I should have, and then, broke the cardinal rule - I lost the keys to that account, so it's drifting somewhere on the blockchain, blissfully unaware of its ownerless status!
A driving factor for rejoining is so I can engage with the HIVE community and hopefully raise awareness around Duchenne muscular dystrophy (DMD). During the diagnosis phase, there are generally two steps that will be taken. The first is to have creatine kinase (CK) levels tested. A child with DMD will have elevated CK. The second step is to have a genetic test to see whether the dystrophin gene has mutated and to determine the nature of the mutation. I remember well, the terror of feeling helpless, after hearing that our son had significantly raised CK levels, but not knowing how to organise the genetic test.
I don't want anyone to experience that terror again. It was horrible, and if I can alleviate it for as many people as possible, then I'll be happy with what I'm doing.
Living in little ole South Australia, I'm a teacher by by trade (or is that profession!). I've been standing in front of students for sixteen years, which is kind of scary because a lot of the students I teach now, weren't born when I began. I'm a high school Digital Technologies teacher, which is just a fancy term for IT. It's an awesome job that is very rewarding.
Just last year, I commenced working at a senior school that has traditionally been an adult re-entry school. It's one of two schools in South Australia that has a new arrivals program (NAP), which means that people who arrive in Australia are able to come to this school and learn English (among other things).
While I don't teach explicitly in the NAP, I do get to interact with the students there, and I love listening to their stories and hearing about how they found themselves in Australia. There's something like 60 different countries and 75 different languages represented at this school, which makes for an engaging and diverse learning environment. It's often a challenge, especially when trying to communicate with students who have just arrived in Australia and cannot speak any English, but it's a very rewarding place to be too.
Since the DMD diagnosis, my wife and I have founded a charity called 79 Exons where we are also hoping to raise awareness of this life limiting condition. One of our main goals is to make available, psychological counselling for siblings and families (but predominantly siblings). I've noticed that my daughter is the 'silent sufferer'. She's the younger child, but just because she's younger, doesn't mean she does not understand and see what's happening. So we're hoping to provide counselling services free of charge to families. We're also in the process of trying to design a mascot for a school-based educational resilience program we're developing. The mascot is proving to be a challenge because my design skills are limited somewhere between low, and lower. But we'll get there!
September is an important month on the DMD calendar (if there is a DMD calendar!) as it's a month where the global community raises awareness of DMD. The 7th is particularly relevant and is known as World Duchenne Awareness Day (WDAD). One of the things people are encouraged to do is to have local landmarks light up red on this night as recognition of DMD. This year, we were able to have three building light red.
As well as sharing my experiences on the HiVE platform, I'm also spreading the awareness of DMD across YouTube and TikTok too, so if you see similar videos there, I'm not ripping them off, they are my original content. However, to be honest, I've already been made to feel much more welcome here than anywhere and won't be surprised if I spend most of my time interacting with the HIVE community.
On a personal level, I enjoy unwinding with a good film or television show, and dabbling in designing prints for t-shirts and other clothing. I recently brought a heat press to transfer my designs, which has been a fun addition to the family. At the moment, we're using the designs as fundraisers for the charity, but I'd be happy to make then more mainstream.
As I bring this in for a landing, I hope that I've given you a bit of an insight into what's happening in my world. I'm really looking forward to being a part of this community, and as mentioned, already feel very welcomed. I'd like to shout out to @futuremind who has commented on the two videos I've already posted and has shown so much kindness to me already (I think I put it in one of my replies to them: 'you've shown a lot of kindness to a random guy posting about a rare condition').
Feel free to hit me up with any questions you may have - I'll be glad to answer them, and if anyone can recommend any communities to follow, I'd be very happy for the input.
I'll see you around the place.
//Steve (d-a-d).