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).
This is probably the tag of the day! Excellent find @ganjafarmer.
I'd love to give you a very warm welcome to Hive, Steve / d-a-d, although you were already clearly familiar with the workings from your Steem days.
So, I'll cut right to the chase: I see that you've founded 79 Exons and also mentioned in the comments that want to open a center for people with DMD and also a wheelchair service. Three very useful projects, some in the pipeline of your mind. I can make occasional posts which will funnel funds directly to your account. What I think would greatly help make such posts get increased votes would be for you to show evidence of how you're using the funds (I recently had a successful post exactly because of this).
I'd also like to introduce @spoonies, who is running a charity account + community for people with chronic illnesses, and DMD would fit squarely into this category since it is progressive and degenerative.
Thanks for creating this account and for this introduction! I'm going to use the FC community account to promote your post and get it out there for more people to see.
Thanks for the welcome and for being so supportive. I've already made mention, but I'm humbled by the kindness I've been extended in my short time (not taking into account Steem time) here. This is nothing like mainstream social media!
I've had a look at the links you provided and am amazed at what people are doing here to help others. What both yourself and @spoonies are doing is so impressive and it's sad that parts of the Reddit community couldn't see the value of your initiative there.
I really look forward to getting to know people in your communities.
Oh just wait we've got some big things coming up! We've got some amazing people doing some amazing things. And I think you were going to be a key part of all this.
I'm really impressed at what you're doing and how you're doing it. The fact that you're doing it here just means that I can financially support all of this and invest in this!
Congratulations!
You should check out this @freecompliments
And I think we know of some help and others that are able to really network with you.
I'm going to vote reblog and refer this post. And follow you!
Awesome post and I love the goals you have set already.
Thanks for the comment and point to the free compliments initiative. Seems like a top idea. I'm all for spreading random happiness to those who need it. Also, thanks for the reblog and getting behind spreading the word about DMD - everything anyone can do to help is much appreciated.
Well I think that you are going to find a lot of people that will support what you're doing.
If you have discord I actually have a free secrets of Hive class that I teach people how to plug in and how everything works around here. Everything from communities all the way to trading and our amazing decentralized finance. I mean you're already getting paid so you might as well start putting some of this free internet money into investments.
You've got an amazing path to walk. If I can help you out in getting there, that would be a good thing.
You can always go to my profile and scroll down to the bottom of my recent posts and find the class syllabus as well as my contact details. I'd be happy to walk you through how this all works out.
Seriously we actually have played to earn video games here! I have feeling that we will be able to open you some more accounts as well!
By all means I hope you are very welcome here.
I really want to write something more meaningful, but all I have is: Thank you.
Dude you wrote a lot of meaningful stuff!
It's my pleasure! Totally following you checking you out and really interested in what's going on so please tag me and keep me involved. There is nothing wrong with a voluntary tag list of people who are interested in your content and wish to continue receiving updates as you post it.
Really excited to support you and it looks like I've got some really cool friends that really like what you're doing too!
I wish you all the success on this platform and if you need any help at all please let me know and my free secrets of high class is absolutely open to you. The more we know how this platform works and the opportunities that we have? The better!
Welcome aboard! I know your struggles as my son deals with Chiari Malformation and Ehlers-Danlose Syndrome. It’s never easy that’s for sure.
But welcome to an awesome community!
Thanks for the welcome and for sharing about your son as well. I'm not sure how it is in your situation, but I find that I can draw strength from the courage my son shows.
Since the diagnosis, he has so many specialist appointments and other allied health appointments that he is almost spending more time in doctor's waiting rooms than he does in school, yet his courage shines through. Eve when a procedure is scary for him, with large pieces of equipment and needles, he perseveres.
As he gets up and smiles at each day, I'm learning a lot from him.
My biggest piece of advice is learn absolutely everything you can about his diagnosis. I have proven doctors wrong and fired many people n some situations because I knew more than they did, and kept my son out of some unnecessary surgeries.
Welcome to Hive @d-a-d! 😃 It is very enlightening of you to explain the condition Duchenne, may you continue to stay strong for your family ☺️ Hope you find it to be an enjoyable journey into the communities here and warm greetings from @dbuzz, cheers! 🍾
D.Buzz is a great place for you to freely express what you want with our microblogging platform. Feel free to make an introduction post and let the community know who you are. 🐝
Awesome introduction post Steve!
It's truly amazing how you and your wife have committed yourselves to raising awareness for DMD by creating the 79 Exons charity initiative. Raising awareness and providing counseling services for families coping with this condition is an impactful way to make a difference for the better!
It's really good to see local support too, Adelaide Town Hall really provided a powerful display in support of WDAD.
It's super cool how you're heat pressing your design work onto clothing and incorporating this into your initiative as well.
Hive is definitely the right place for a brilliant mind like yourself who obviously has a big heart for children, and I assure you that everyone on Hive will be in full support of you losing your Steem keys given the history of the place.
I'm happy I was able to help you feel welcomed here. Once in a while I stumble onto content like yours and it stands out to me in a big way :)
"A Dad Will Do Anything"
Indeed :)
A big hug from me to you and your amazing family, and may your journey on Hive help with your passionate goal for raising awareness for Duchenne muscular dystrophy!
We've got a stack of ideas that we'd love to get off the ground. One day, I'm hoping to be able to open an holistic centre that can help all people with muscular dystrophy (there's something like 60 different types of muscular dystrophy) - a place where an array of professionals can offer help to families and patients in the one place. I really want it to be inclusive from the second someone enters the car park - even to the point that there are no 'disabled' parks, because all of the parks are sized to cater for specialised vehicles.
Because we're approaching summer, I'd like to offer a beach wheelchair hiring (or even a free) service at local beaches because a road-type chair cannot go onto a beach - the wheels are not sand friendly! (My son's chair has lights embedded in the front wheels - they look awesome, but don't function well on anything but relatively flat surfaces.)
You got some high hopes and I think we should be able to help you achieve those!
Well I appreciate you helping him out as well!
Likewise brother! <3
Welcome to Hive, Steve (d-a-d)! It's wonderful to have you here, even though the reason behind your journey is to raise awareness about Duchenne muscular dystrophy (DMD). Your dedication to making a positive impact and supporting families dealing with this condition is truly inspiring.
I appreciate the valuable work you're doing through your charity, 79 Exons, and the focus on providing psychological counseling for siblings and families affected by DMD. It's crucial to acknowledge the emotional toll that serious medical conditions can have on family members, and your efforts to address this aspect are commendable.
Your work to light up local landmarks in red to raise awareness on World Duchenne Awareness Day (WDAD) is a meaningful way to draw attention to DMD. It's heartwarming to see communities come together for such important causes.
I'm glad to hear that you've already had a positive experience in the Hive community, and I'm sure you'll find many supportive individuals and communities here. The kindness and support of community members are some of the things that make Hive special.
Feel free to explore various communities on Hive that align with your interests, whether it's charity, health, or other topics. There's a diverse range of communities to discover and engage with.
Thank you for sharing your story and your commitment to making a difference. I look forward to seeing your contributions and getting to know you better here on Hive. If you have any questions or need assistance, don't hesitate to ask. Welcome again, Steve! 😊🕊️🧡
Hey - thanks for the welcome message. Yes, everyone here has been really inviting and already made it a standout experience. WDAD is one of those bittersweet days - I kind of wish i didn't know about it, because that would mean my son was healthy, but then, on the other side of that coin, how much good can come from being a part of that day as well? I'm not smart enough to be able to find a cure, but I can certainly use my skills to raise as much awareness of it as possible and help bring funds to those researchers who can find a cure. So, in a way, I am glad that we are a part of WDAD.
If I have any questions, which I am likely to, I'll certainly take you up on your offer to ask. Thank you.
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STOPTo support your work, I also upvoted your post!
sorry to hear that about your son and welcome to hive!
Thanks for your comment and welcome. He's a resilient kid, and I have the impression that he will not let his condition get him down. You know those types who light up a room when they walk into it? He's like that, which is great.
Wow that's amazing. It's really amazing how there are some that are so positive despite situations that they are in. He probably could be a speaker and try to inspire other kids
2 Week Promotion! 😀
You are awesome!
Welcome to hive, hope you achieve all your goals and more here. Good to have you here
Thank you. I appreciate the welcome.
You're welcome
Welcome my friend
Thank you.
You are certainly a good father, no doubt, seeing how you were able to support your family. Sorry about your child's condition.
Welcome to the Hive community.
Hi there, thanks for your kind words and welcome. I’m looking forward to being here - the community is very welcoming and supportive form what I’ve seen so far.
Oh my God, I'm so moved... As a mother, trust me I know how deeply you love your kid! I feel a bit bad because I read this so much late. Hope you and you boy will be just fine! Loved your post, youuuur wordss!! @d-a-d
Welcome! I hope you have a great time over here!
Thank you. There have been so many positives so far.
you‘re such an inspiration :) Thank you for sharing your story with us and welcome to hive!
Sorry to hear about your son's diagnosis, that's a tough one. Research is constantly ongoing and hopefully we'll find some better treatments or even a cure!
Thanks for your comment. I’ll never stop holding on for a cure, but as with anything genetic, it’s a complicated condition. There are possibly millions of combinations when it comes to the DMD mutation. They’re working on it though, which means there’s always hope.