With your generous support, children like Lexi can receive the gift of education and social connection this Christmas.
While other kids are busy getting ready for Santa’s arrival, Alexia and hundreds of children just like her are working hard to join their peers at school next year. Steven, Alexia’s dad shares their story.
Hi, my name is Steven, and I am the very proud father of little Alexia, my beautiful five-year-old daughter. Alexia, who we affectionately call Lexi, is a caring and compassionate child who loves to imagine, play and go exploring in her cubby house. She adores life and when I ask her what she wants to be when she grows up she always says, “I want to go to space”. She’s just like any other child her age except for one major difference – she was born with a rare genetic condition affecting her vision, making her legally blind.
Having been diagnosed with aniridia earlier in my life, Lexi’s mother and I hadn’t given much thought about whether this condition could be passed on genetically but soon after Lexi was born, with a simple eye test, we discovered that she also had it. I felt deflated when I found out – no parent wants to be given such confronting news, least of all when it was something that was passed from me.
However, living with aniridia for my entire life, I knew what to expect and was eternally motivated to ensure that she had the best life possible.
As a father, my number one priority are my children and my biggest hope in life is that they grow up happy and fulfilled. I am confident that this will be the case, but I also know that it will not be without its challenges.
I can remember what it was like growing up having my vision deteriorate and the issues that came with it: some major things like the struggles of school and feeling accepted socially; to the little things like being able to ride a bike on my own to eventually requiring a tandem bike. For Lexi, it’s those little things that people take for granted, like a butterfly floating past or a bird flying overhead that I wish she could see, because those little moments, when you are lost in time, end up being some of the biggest things in life.
Fortunately, having personally received the care and specialist expertise from Can:Do 4Kids meant that living with aniridia was not a barrier to living the life I want, and so I knew exactly where we needed to go.
Lexi began her therapy with Can:Do 4Kids when she was just four months old and from the outset, the commitment the therapists showed gave both Lexi’s step-mum, Adele and I instant confidence and optimism. They know that being a parent of a child who is blind is not a one hour, once a week session – it’s a constant journey that requires dedication and the therapists provide us with the tools we need to continue that journey when we walk out of the door.
Lexi accesses occupational therapy and the orientation and mobility service, and as she grows older, loves her time with her therapists and the way the therapy is delivered. They show genuine care in her interests and goals and are able to adapt their therapy to not only suit Lexi’s needs but also how she is feeling on the day, always being prepared to take the sessions in different directions. More recently, we have been introduced to a parent-driven approach where my wife, Adele, runs the session and the therapists provide prompts, affirmations or ideas – keeping it therapy-based. I have been incredibly proud to see how well Lexi has responded to this new style and she has made such uplifting and positive improvements in her development – her potential is endless!
The next major milestone we are preparing for is her first year at school. It’s a huge chapter in any child’s life and one that she cannot wait to begin – and neither can we. We cannot wait to see how much she learns and grows – she has already taken such big strides this year at kindergarten and has changed so much. In saying that, Lexi’s next step is her social development. Her social norms such as how close she stands to people can be unsettling for other kids, and she has difficulty recognising people from a distance, knowing what her friends are doing or where they are going. This can make it challenging to build meaningful connections.
Thankfully, Lexi has recently been enrolled into Can:Do 4Kids’ school holiday group programs where she can learn to develop those vital social skills and connect with other children with the support of her therapists, and we know that this will give her the best opportunity to not only make friends at school but to also be part of the wider community.
As we get ready to decorate the Christmas tree – Lexi’s favourite part of the festive season – we know that she has some hurdles to clear in terms of her development, but I know that with the help of Can:Do 4Kids and the generous supporters who give each year to make a change in children’s lives, she is going to have everything she needs to live a life of her choosing; and a life where she is connected and happy.
Thank you so much for taking the time to read our story.
Please donate today to ensure that our children are able to receive their life-changing services, so one day, they can all reach for the stars.