When you meet Heston you’ll quickly learn that he is the sweetest, most gentle soul. He has a smile that can brighten up any room and is famous for his spectacular and contagious giggles. Heston loves music and watching his peers play. He enjoys colourful shows – “The Backyardigans” is his favourite.
Heston is diagnosed with Sanfilippo syndrome, a condition caused by an enzyme deficiency. Unfortunately, Heston’s disease is terminal and regressive. Since regular milestones don’t seem to apply, his family’s goals are for Heston to have the happiest, most pain-free life possible.
Heston lives in Victoria with his parents and four brothers. His dad, Jordan, works as a warehouse manager and his mom Kerena takes care of the kids at home. Their community is an incredibly supportive one with church, friends, family and school providing a network of help and encouragement.
How Variety Steps In
In 2014, his family applied to Variety for a van conversion. Heston uses a wheelchair for mobility, which could only be transported safely in a vehicle with tie-downs. Thanks to our donors, Variety was able to contribute funding towards this vehicle. Since then, Variety has provided grants for other necessary equipment for Heston. In 2016 he received an adaptive stroller for mobility at school and in the community. The stroller gives Heston’s family flexibility with his transportation needs and helps him access school, the bus, and the community.
“The equipment Variety has funded for Heston has allowed our family to go on outings and carry on as normal a life as possible for Heston. It has decreased some of the limitations we faced with Heston’s declining abilities and allowed us to continue to make memories together as a family. It has also helped keep Heston comfortable, which to us is very important.” – Kerena, Heston’s Mom
Most recently, Heston has been approved for a ceiling track that provides a safe and straightforward way for his caregivers to transfer him between points in his home and different activities. He was also approved for a pressure-relieving mattress which helps with his skin pressure sensitivity.
Heston likely only has a year or two left, so enjoying experiences and making memories is the most important thing for his family. Thanks to our donors, Variety is able to contribute to Heston’s happiness and wellness. When you support Variety, you support kids like Heston.
A Note from Heston’s Mom
“Children with disabilities are an amazing gift. They can teach us more than a thousand books and can give us a greater perspective on life. While caring for a child with disabilities can be financially, physically and emotionally exhausting, we can gain so much from them.
For us and for Heston ‘little victories’ are not found in his accomplishments, but in making the most of the time he has left. His disease is regressive and he is losing abilities all the time. In the past couple of years he has lost the ability to eat, and the ability to walk. He very likely only has a year or two left, so making memories, and giving him experiences are what is important for us. The fact that Heston is pain-free is the most significant accomplishment we can have.
Thank you for your generosity to a great cause. Variety is wonderful, and truly helps families like ours who are going through so much already. They continue to provide support time and time again, which is so valuable to families like ours who face different needs and obstacles as our child regresses.
Thank you for doing what you are doing – making a difference in the lives of children and their families. Children with challenges face so much, and expenses can be staggering. Please continue to work to aid them and their families along their journey.” – Kerena, Heston’s Mom