As the saying goes, charity begins at home.
I heard this recently from a family who comes to Minda for their young son, Beau. Despite the challenges of raising a 10-year-old with Down syndrome and Type 1 diabetes, they feel lucky to be together and to be coping day-to-day. They can’t fathom how hard it must be for people who aren’t as lucky as they are:
“We know of many other families who have much harder challenges than us,” Beau’s mum, Karyn says.
“We really enjoy volunteering, helping out with fundraising and being part of the disability community. As a family, we find it very rewarding.”
To start off this year, Beau’s family have decided to share their journey. They hope it will spread awareness and raise much needed funds to continue to provide the best possible services for people with disability.
Beau is a beautiful little boy with blonde hair and a cheeky smile. Like other boys his age he likes music, being outdoors and playing with other kids.
“He wants to fit in. Whenever he’s around other children, he just wants to be included and accepted,” says Karyn.
The news that their son had Down syndrome was a huge shock for Karyn and her husband, Jason.
“The day our son was born we were faced with two life changing words – Down syndrome,” Jason says.
“At that moment, all our dreams and aspirations for him seemed to disappear. We didn’t know anything about disability – what to think, what to do, what it meant for Beau, or the future of our family.”
Even though Down syndrome is relatively well-known, coming to terms with what the diagnosis means for your child and your family would be incredibly difficult. I have spoken to hundreds of families and the strength people find in these testing times always amazes me.
The family – including Beau’s sister Cody, who was 5 years old at the time – took everything a day at a time, working together to get on with their new life.
“As a result of Down syndrome, Beau has most of the distinctive physical features along with a moderate hearing loss, speech and communication difficulties, sleep apnoea, slow learning capabilities, low immune system, ongoing ear infections and poor muscle tone,” Karyn says.
Beau has also recently been diagnosed with Type 1 diabetes – a lifelong autoimmune disease.
“It broke my heart. To stay alive, Beau must have 4 injections of insulin a day and constant monitoring of his blood sugar levels by pricking his finger,” says Karyn.
“Although there have been tough times, we can’t sit there and look in the mirror and say why us. It is what it is, we just have to manage it,” says Jason.
Often, people with disability will need lifelong care. Will you please offer support to these families with a donation today?
For families who have no other support network, caring for someone with disability can be especially isolating. Jason, Karyn, Cody and Beau moved to Adelaide from Illawarra region, New South Wales, 2 years ago for Jason’s work and it has been a struggle.
“Unfortunately we don’t have any family support in Adelaide and Beau needs 24/7 care,” says Karyn.
“It has been difficult meeting people who understand the challenges of raising a child with disability and a health condition.
Beau is extremely sensitive to sensory experiences, transitions and can get upset with any change in routine. It’s hard to organise going to the movies, eating out, a trip to the park or even a drive in the car. Our schedule depends heavily on how Beau is doing each day,” she says.
One of the things that Karyn and Jason wanted for Beau is to be able to ride a bike. When he was younger, Beau received physiotherapy to help him walk, but his balance and core strength still needs work.
“We often take Beau to the skate park where boys his age are riding their bikes and scooters and Beau would just sit there watching them for hours. It breaks my heart to see how much he wants to join in and be one of the boys,” says Karyn.
That is when the family sought out support from Minda. Now, Beau attends regular physiotherapy and occupational therapy to help him get stronger. He’s not on a two-wheeler just yet, but Beau is practicing and having fun on a trike.
“After 10 years, we finally have Beau riding independently up and down the walkway at Brighton Beach on his new modified trike. We are still working on teaching him the road rules, but it makes us proud to watch him have so much fun,” says Karyn.
Reaching this milestone is such a wonderful achievement for Beau. It may seem small, but it is bringing so much joy to this little boy’s life. Thank you for helping put a smile on Beau’s face.
As most young boys, Beau is very playful and cheeky. Due to his delayed development, he can struggle to control his behaviour and can become frustrated and restless when he is unable to understand what or why something is happening.
“He struggles to settle at night. To get to sleep he needs arm and back rubs and back scratching, just the physical comfort of Mum or Dad, so he still sleeps between us every night,” says Karyn.
Donations help kids like Beau by giving them access to valuable supports that can make a huge difference in their life. Having access to occupational therapy is helping Beau to deal with everyday activities. This includes managing his specific triggers and knowing how he can keep settled.
Just a little bit of support can make such a difference to someone’s life. I hope you will support people with disability by making a donation to Minda. Your kindness can have a big impact.
Beau is continually learning at his own pace and is achieving more and more, but Jason and Karyn are currently taking everything as it comes. Beau’s needs are often changing and it’s hard to plan too far ahead.
“I hope Minda will be able to help us and Beau in the future – they have been very supportive and understanding. We are still learning about what Beau might need and what will help him,” says Karyn.
With your donation, you can give kids with disability opportunities for their future, from having fun to developing their skills so one day they may have the opportunity to work and live independently.
“We’ve had many challenges and hurdles over the last 10 years, but Beau has taught us that with acceptance, patience and even very little sleep – we can do it,” says Karyn.
A donation today will bring happiness to families like Beau’s. That is an amazing gift.
Chief Executive Officer