We have 4 exceptionally wonderful children. Our twin boys were diagnosed with A-T over 5 years ago. To say it came as a shock is an understatement. Apart from their balance not being quite right, they hit every developmental milestone in their early childhood so we were not expecting a serious diagnosis at all.
I will always remember my husband’s words on that most awful diagnosis day – ‘The Doctors can tell us that the boys have A-T and their life will be difficult but they can’t tell us that they won’t be happy’. We have lived that way ever since, fighting the difficult times and thoughts but being happy. Living for today and finding joy from life, striving to be positive and as one of the boys says ‘getting on with it’.
When you have a child with A-T, you are not only their parent but their greatest supporter, advocate, teacher and caretaker. We have learnt to fight for our children to get their needs met and we hope that shows them how to be strong which they will need to be. We hope we can prepare them for living in this world with a disability and give them every tool possible to do so.
At the time of writing this, the boys are 7 years old, fun loving and have a wicked sense of humour. Recently, they have become increasingly more aware of their ‘wobbly legs’ and that the Doctors can’t make it better. Their health has started to deteriorate. They have begun to use a wheelchair for long distances. Their school work has become challenging as they are now finding it difficult to hold a pen to write. It’s very frustrating for them because their minds are bright but with every issue A-T throws at them, we see an incredible strength of character to adapt and enjoy life come what may. We are very proud of them.
We have had amazing support from family, friends and our community who have done so many events to raise funds for vital medical research into A-T. Like us, they know that research is the only way forward. Without research, nothing will ever change and children and families like us will continue to have to suffer the effects of A-T. Medical research enables scientists to learn about the condition and how to potentially develop treatments to improve life for children and adults living with A-T. We cannot simply give up…what has ever been achieved by giving up? Scientific breakthroughs for A-T will undoubtedly happen…with time and money to get us there.