This week we've been lucky enough to be a part of Walk for Duchenne, an awareness (and fund) raising initiative spearheaded by Save Our Sons, a charity that is seeking to find a cure for Duchenne muscular dystrophy as well as raise awareness.
An annual event, each year, the charity selects a state in Australia to host it. 2024 saw SA being the privileged state in which the event took place. I say privileged because to be able to play host to such an enthusiastic team of people who, in some cases, have no ties to children with Duchenne other than a heart of gold is actually nothing short of just that... a privilege.
The founder of Save Our Son is a father of a child with DMD too, and he's passionate and invested in seeing word spread about this condition as well as funding efforts to search for a cure, and above all else, he understands what other parents are going through because he, too, is raising a child with this condition.
We met so many great people over the past few days, and something that we just can't shake is the circumstances in which we are crossing paths. If it weren't for this condition, we would very likely not be coming into contact with this awesome bunch of humans, which is mind-boggling. It's one of those things that if you were to think about too long, it would scramble your brain. And while I cherish these new friendships, would I rather never have known them, if it meant my son was healthy?
It messes with your head.
Sunday was the opening of the 2024 walk, and we were able to attend a community lunch and walk, where many families who have children with Duchenne got together to celebrate our children and the fundraisers who flew in to raise awareness. We walked 7.9 kilometres before being provided with lunch and some activities for the kids. 7.9 is the magic number because of the dystrophin gene that is affected by Duchenne. This gene has 79 exons on it, one or more of which are mutated in a person with DMD.
The following four days have been spent with the 'walkers' going to different metropolitan and regional centres and walking to schools of some of the younger children. I would've loved to join them for these sessions, but I didn't think I'd be able to get the four days off work because I'm taking three days off next week so I can attend my sons camp as his primary carer, and I also took today off, because the walkers visited my son's school today.
The school visits are well planned and the founder of the charity talks to a select number of students from the heart. He tells them a little about his son and their walk with Duchenne and how he came to hold these annual walking events. The focus of the talk is on inclusivity and how it doesn't take a lot for students to be inclusive of their friends.
There's a lot to be thankful for this week and it's nice to be sharing something that is positive. I've said since I started blogging/vlogging about all of this that not everything would be negative, and I'm glad that I can keep my word on this. The generosity of people blows my mind sometimes, and while all of the walkers were constantly thanking us for having them and letting them into our school, I'm the one who's thankful. I'm so thankful that they chose our state and our school so that our son could be championed by them. Seeing them clap him as I wheeled him into his school is something I'll never forget.
Way to go! Well done! It's such a shame that such a tiny piece of an exon can cause such a devastating disease. I studies molecular biology in undergrad so I know exactly what one point mutation can do. I'm hoping we can find a way to effectively treat it the near future!
!DHEDGE
I know! One small and seemingly insignificant mutation can cause such a huge amount of havoc on the body. I’ve never formally studied anything around biology or genetics since finishing high school, but have read a heaps of books since we got his diagnosis. Fascinating stuff, but difficult to digest when it’s so close to home.
I’m not even sure how they begin to search for treatment or a cure, but I’ve got an idea for a fundraiser I’d like to run this year. I’ve been wanting to formally launch it - even got a logo made and created a Discord server for people who’d like to support it. I’ve written a launch post and deleted it about four times. Concerned that people won’t get behind the idea.
!DHEDGE
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