By Sheree Hoddinett
A cheeky smile, beautiful brown eyes framed by long eyelashes and a head full of crazy curls, Malakai Carmichael is constantly ‘on the go’ like most other two-year-old boys. But there’s a part of his life that now sets him apart from most other toddlers. Malakai has Duchenne Muscular Dystrophy (DMD), a condition that will greatly alter the way he lives his life as he grows. Unaware of DMD until Malakai’s diagnosis, his parents Georgia and Rob are now hoping to create as much awareness as they can, while also making Malakai’s life as normal as possible.
It was just after Malakai had turned one, that Georgia and Rob discovered, by accident, that their little boy wasn’t well. Malakai hadn’t been to the toilet in almost 24 hours therefore a trip to the hospital was in order. It turns out that Georgia’s milk had dried up due to a surprise pregnancy with baby number four and Malakai hadn’t been getting any fluids. However, it wasn’t until four months later that their entire world was turned upside down.
“We got a phone call four months after that trip to the hospital to discuss Malakai’s blood test results and straight away something told me this wasn’t going to be good,” Georgia says.
What followed can only be described as heart wrenching for this Narangba-based family, who had once upon a time called Bribie home. They were initially told they needed to see a liver specialist as Malakai’s results showed he had a fatty liver, resulting in further testing and the eventual diagnosis of DMD.
“So, we did more blood tests and on the Friday afternoon the specialist rang and said Malakai had DMD. I asked, ‘what does that mean’?” Georgia says. “I had never heard of it before. The specialist told me that what we were about to go through was very scary. That was 4pm on a Friday. I got off the phone and googled what DMD was. Google told me what was wrong with my son. I rang Rob bawling my eyes out and we just cried all weekend. It was pretty life shattering.”
“It’s certainly not something you expect to find out about one of your kids,” Rob adds. “It was hard to hear what his diagnosis was, especially not knowing much about it at the time. We’re still learning so much about DMD as we watch what it does to Malakai.”
So, what is Duchenne Muscular Dystrophy? It is an inherited disorder of progressive muscular weakness, typically in boys. DMD is caused by a genetic problem in producing dystrophin, a protein that protects muscle fibres from breaking down when exposed to enzymes. Symptoms include frequent falls, trouble getting up or running, waddling gait, big calves and learning disabilities. Sadly, there is no cure, however some treatments and medications can help control symptoms and improve quality of life.
With two boys and two girls in the family, it seems so far Malakai is the only one with the condition. His older brother Keanu is showing no signs of DMD and for his sisters, there is a 50/50 chance of being a carrier like their mum, which means they have the chance of their heart becoming enlarged. For Georgia as a carrier, this will mean her heart needs to be checked every five years. If anything does happen and is caught in time, she will go on medication. But what is unusual about Malakai’s case is his young age.
“Normally you don’t find out until about primary school age when they start doing sports carnivals and they can’t run and jump like all the other kids. That’s when it usually starts to show,” Georgia says. “From here, it’s sort of a waiting game to see what his body does. At the last appointment, we spoke to the Heart Doctors. He’ll start heart medication when he goes to primary school. We have fortnightly OT and hydrotherapy for him at the moment. He wakes up about eight to nine times at night, so sleep is difficult. He also has days
where he’ll just scream in pain and hold different parts of his body. He falls a lot as well, that’s one of the symptoms. His muscles don’t rejuvenate like they should.”
With Malakai too young to understand or comprehend what’s happening to him, Georgia and Rob describe it as one extremely difficult scenario for this family to live with.
“It’s scary, she (points to Malakai’s baby sister) is going to overtake him at some point. But how do we tell him?” Georgia says. “My husband is 20 years older than me, so for me it’s knowing I’m going to lose my parents, my husband, and my son all at the same time. That’s really scary for me.”
“The idea of losing your child is not an easy one to live with. No-one wants to think about that,” Rob adds.
Doctors can’t pinpoint an exact age that Malakai could live to, as DMD affects each individual differently.
“Some people have lived into their 40s. Some only make it to 20, but they have never found it in boys this young,” Georgia says. “When we said he was in pain, they said he wouldn’t feel pain like that unless he was walking around Movieworld all day. They wanted to put him in hospital for a week and see if it was behavioral. But there was no way we could do that because it would be his behaviour if he was stuck in hospital for that long. I’ve asked about trying cannabis oils and trying chiro, but they were way against it. We did get some CBD oil and rubbed it on his legs before bed. However, we didn’t see it made much of a difference for him.”
From undertaking her own research, Georgia has uncovered that there is 1 in 3500 Australians living with DMD. Finding a support network for others going through similar experiences has also proven difficult.
“I’m still trying to understand why all this is happening,” Georgia says. “You do think, why us? Malakai’s body tires easily, he wants to be picked up a lot. It’s hard to tell if it’s his body or his behaviour. We just have to take each day as it comes. You just don’t know when their body is going to start failing. The only support I’ve found online is overseas. It’s really hard to connect with others. The future is scary for us but we’re holding onto all the hope we’ve got and living in the moment as much as we can.”
Life sure is hectic for this young mum. With four kids aged six and under and coping with Malakai’s diagnosis, Georgia finds her release at the gym, because her ‘head doesn’t stop’. For Rob, this journey is also proving to be one of many ups and downs.
“It’s been really tough and not something you would wish on anyone,” Rob says. “For me and work, it’s been hard having to take so much time off for much-needed appointments or when Malakai is having one of his bad days. But you do what you need to when it’s for your kids.”
Now this amazing family is on a mission to raise as much awareness as possible about DMD and fundraise to help their beautiful little boy live as comfortable a life as possible.
If you have any ideas or can help assist in setting up fundraising, please reach out via email rob.gee.carmichael@gmail.com
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