Let’s be honest, 2020 has been a tough year for most.
But for many parents and families of children with intellectual disability, 2020 has been especially hard.
Fortunately, though, when they reach out for help here in South Australia, they find it. We’re so lucky to have a wonderful caring community here in our state.
One such family is 13-year-old Liam, his 15-year-old brother Travis, and their parents Andrew and Michelle.
Liam was diagnosed at the age of three with a rare condition called Creatine Transporter Disorder (CTD).
“Travis was talking at two and a half, but with Liam we picked up something wasn’t quite right, his development seemed delayed in comparison,” explains his Mum Michelle. “The Women’s and Children’s Hospital tested children who weren’t thriving, and Liam tested positive for CTD at about three years of age.”
The devastating part of Liam’s diagnosis for Michelle and Andrew was that nothing could be done to help him.
Creatine is a substance made by our bodies and delivered to our brains. It’s how we learn and remember things. Liam’s body produces Creatine but it doesn’t make it to his brain where it is needed. There are three types of creatine transporter disorders. Two can be treated with creatine. Liam’s unfortunately cannot.
Liam is one of just five Australians with CTD and the only diagnosed case in South Australia. He’s a unique boy with unique challenges.
As a result, Liam and his family face significant social, communication and behavioural challenges. I’m sure you’ll agree, Liam deserves the very best care and support – with a gift today you can make this possible.
Although 13, Liam's speech is at a stage typically expected for an 18-month-old child.
His CTD also causes seizures, which must be kept at bay with medication for the rest of Liam’s life. His body struggles under the burden of CTD and he is underweight and below height for his age.
But of course, it’s not just Liam who is affected by CTD. His parents and older brother Travis must live with the impacts every single day. Liam requires constant supervision, not just to do the everyday things he needs to survive, but to stay safe. He has no concept of danger and will run onto a busy road if left unsupervised.
There are so many families like Liam’s in South Australia. They may live on your street, but you won’t see them because they rarely leave the house together due to the danger and stress that it causes.
With a gift today, you can help bring hope to children like Liam and their families.
Liam’s parents love their son dearly, but sometimes it all gets too much.
This is where Minda comes in – to provide respite. Liam is a regular at one of the short-term accommodation options, Variety House, where he comes for overnight and day stays. He uses the facilities every Tuesday and Wednesday night, two weekends a month, and for day support.
For Liam and his family, Minda’s Variety House plays a huge role.
“Liam is like a toddler in a teenager’s body. It can be full on and we’ve been upping his respite care of late, so that everyone can have a break.” Said Michelle.
“Liam loves Minda respite. He sleeps so well for 12 to 14 hours whereas at home he’s up at 4am.
“The respite house is set up so that it’s an environment where he can do what he needs to do. The areas he can go are clearly defined. In the family home there is so much stuff around him and too many distractions. He can be more himself at the Minda house.”
Looking after a child is hard enough. Can you imagine the physical and mental exhaustion of caring for a growing, 13-year old with CTD?
“When he’s having a bad day and not coping well it can be especially difficult. He’s incontinent and it takes two people to change him. We have to lock everything away that we don’t want him to get into and the breakables are washed and put away every night for that extra security.
“He has no idea of safety. If doors are left unlocked he’ll run out onto the road. We’ve had a few close calls - it’s quite scary.”
At one stage Liam had an abscess behind one of his teeth, which he couldn’t communicate to anyone. He was getting angry and throwing things constantly.
“It got to the point where we couldn’t have Liam at home. He ended up in crisis care for a week.
“If we call crisis care again we might be forced to give Liam up to someone we don't know,"
We know that Liam’s parents aren’t the only South Australians who care about his wellbeing and his future. We all want children like Liam to have the best care, so they can be with their families. <First name>, will you consider a gift today?
“With Minda, Liam is learning to shower himself. He’s taught to be independent and do things for himself, whereas at home he wants me to feed him. He’s upskilling with the help of the Minda support staff and I’m beginning to see the results.”
Variety House itself isn’t covered by the NDIS. Your donation will help ensure that upgrades required, to provide more skill based activities for increased independence and more sensory items, can happen sooner.
Minda’s Variety House is an important resource for South Australian kids with disability. But as you can see, it’s every bit as important for families. Variety House helps families stay together.
“I’ve sat and observed how the staff interact with the kids. The patience they show and the way they engage with the children is absolutely amazing. It’s stuff that we just don’t have time to do with work and a family. That’s where the Minda team is really good and why Liam is so happy going there.”
Liam will always need NDIS support. He’ll need one-on-one care for the rest of his life.
Liam has been attending Minda respite care since he was nine years old. Minda staff understand what the children in their care need as well as what the families of the children look for with respite.
“What I love about Minda the most is the staff take everything in their stride. Even if it takes Liam two hours to get in the car for an outing they’ll wait him out patiently.
“Disability care is very complex. It’s hard to navigate and you need the right support team around you.
“For us, Minda is a lifesaver.”
PS. With your gift today we can continue to help families who are desperate for support. A donation today can change a life.