When new mum Tania gave birth to triplets – Julius, Kyle and Luke – she was ecstatic that they all appeared to be healthy.
Like many first time parents, Tania and her husband Allen had spent a lot of time reading and researching. In anything she saw about multiple births, Tania noticed there often seemed to be something wrong with one of the triplets, so she was extremely relieved all her boys were seemingly okay.
The first few months were a whirlwind for Tania and Allen, as they adjusted to the massive change in their lives caring for three newborns. However, it wasn’t long before they began to notice that the eyes of one of the boys, Kyle, seemed to be almost constantly moving.
Beginning to suspect something could be seriously wrong, Tania and Allen sought advice from an ophthalmologist. Initially their concerns were brushed off, being told a lot of babies can have a similar problem, but that it usually settles within a year. As much as she wanted to believe this was true, Tania’s instincts told her they needed to get a second opinion.
This time, their fears were confirmed.
A second ophthalmologist advised Kyle was displaying signs of what could potentially be a serious vision condition, but he was too young for them to determine exactly what it was.
“Kyle was only about six months old at the time and still too young to be diagnosed, so we were told time will tell and then just had to wait until the condition evolved,” Tania explained.
“Eventually we got an answer but unfortunately it turned out to be the worst case scenario. Kyle was diagnosed with a condition called Leber’s Congenital Amaurosis – a rare genetic disease caused by both parents carrying the recessive gene, which causes severe vision impairment.
“We were heartbroken to think that Kyle could not see and felt helpless that there was nothing we could do to remedy the situation. It was devastating to think he would never get to experience even just the simplest pleasures in life, like watching the sun rise or set.”
Many of us fear losing our vision with age, but could you imagine being told your newborn baby would never be able to see the world?
With three baby boys to look after, Tania and Allen had no choice but to carry on. In what little spare time they had, they continued conducting research and looking for answers about what Kyle’s
condition meant for him and his future.
“Eventually I realised that we’re never going to fully understand Kyle’s disease, as very little research was available at the time and there’s nothing we could do about it,” Tania said.
“It made me feel incredibly vulnerable, but I just had to resolve myself to the fact that it didn’t matter what we called this disease. The reality is that Kyle was blind and we just had to try and cope with it and carry on.”
Despite their acceptance of his condition, Tania and Allen were still desperate to do whatever they could to help Kyle live life like any other child. With minimal support available for vision impaired children in their home of South Africa, they researched mobility aids to help people with low or no vision and purchased a cane for Kyle. Their research could only get them so far though. With no one to teach Kyle how to use his cane properly, he continued to cling onto his parents or brothers to be able to walk around.
“We enrolled Kyle in a school for children with additional needs in the hope that they would be able to help him and teach him the skills we knew he really needed to be independent,” Tania said.
“Unfortunately, because the school catered for kids with all kinds of disabilities, the few blind children that were there just weren’t a priority.”
Tania and Allen grew to realise that Kyle would never live the life they wanted for him if they stayed in South Africa. This led to one of the hardest decisions of their lives. Either they could stay, knowing Kyle would never receive the opportunities every child deserves, or they would need to move with their three young boys, leaving their jobs, their home, their family and everything they’d ever known behind them to find a brighter future for Kyle.
Tania and Allen chose opportunity.
Knowing there were organisations that also helped children with low or no vision in Australia, they chose to settle in Brisbane and reach out to Guide Dogs Queensland to assist Kyle with his mobility.
The support Kyle received from Guide Dogs changed the course of his life.
With the help of his instructors, Kyle was finally able to learn how to use a cane properly and receive the support he needed to stand on his own two feet. He had the opportunity to attend school holiday camps alongside other children with low or no vision to grow his skills and confidence. His family also received training to help them understand his daily challenges and how they could assist.
We know from experience that the first few years of life are crucial for a child with low or no vision to gain the skills they need to become confident and successful adults in the future. A donation today will allow us to help in the journey of many more families like Kyle’s.
“Having a child with a disability is a very lonely journey,” Tania said. “When we learned there was actually a whole organisation focused on helping people who are blind or vision impaired like Kyle, it was just an incredible feeling. Having the support and knowing we weren’t in it alone was worth nearly more than the actual tools and techniques the instructors taught Kyle.”
Over the years, Kyle continued to work with Guide Dogs, taking part in various programs and working one-on-one with instructors to build his skills and confidence. Being able to use a cane and learning more mobility techniques opened up his world and gave him the confidence to become an impressively independent young man.
Now 16, Kyle still works with his instructor Jess once or twice a month to enable him to continue developing essential skills to meet his evolving needs as he grows into adulthood. These days he’s able to share his own goals with us, and has Jess alongside him helping him to achieve them.
“Jess teaches me to do all kinds of things, like catch public transport and get around the shops that I go to with my friends. We talk about the goals that I’ve set for myself and then focus on trying to achieve them,” Kyle said.
Due to his low vision, Kyle misses out on a lot of things friends his age enjoy, like playing team sports and watching movies. Instead, he focuses on his passion for running, undergoing rigorous training and racing competitively at state and national levels, with the assistance of a sighted guide runner. Kyle has to travel over one and a half hours up to six times a week to various training sessions. One of his most recent goals was working with Jess to learn the way, and now he is able to get there independently by catching the bus and walking the rest of the way.
As a mum, Tania’s main priority is that Kyle always has the support he needs to fulfil his potential and live his life to the fullest.
“I couldn’t bear the thought of looking back one day and thinking, maybe there was more we could have done or something we could have done differently to give Kyle a better chance to be content and happy.
“We just want Kyle to reach his potential, in whatever he wants to do, and for him to be an independent adult that enjoys life as much as anyone else. “It helps to know that we don’t have to do the journey alone, knowing there are wonderful people like Jess and the team at Guide Dogs Queensland who are supporting our family and walking alongside us the whole way.”
One of the most rewarding parts of our work is seeing young people like Kyle not just achieving their goals, but exceeding even their own expectations. Kyle is now an incredibly independent 16 year old because of the early intervention he received from Guide Dogs Queensland. His experience demonstrates what’s possible for a determined young person to achieve with the right support, despite having no vision.
This is something we want for many more kids, currently at that crucial age where they need support and intervention now, before they start falling behind in life. There are still many children and young people like Kyle right across Queensland who need our help, but we can’t do it without your support.
With your generous donation this Christmas, we can open up a world of opportunities for kids and young people living with low or no vision across Queensland, just like we’ve done for Kyle.