Kiind member, Alexis is a single mum of two children, Ayesha who is 17 and Zachary who is now 15. Due to Zachary’s diagnosis of complex neurofibromatosis and autism, Alexis has had to put her own life on hold to be is full-time carer.
Zachary was showing signs of neurofibromatosis when he was born, as he had a large head and some spots along his body. When he was 18 months old, an MRI confirmed he had multiple tumours, mostly situated on his arms and legs.
It wasn’t until Zachary turned 13 and started puberty that his disability journey really began. It was found that he had tumours on the back of his skull, causing him severe headaches and pain. This led to Zachary seeing a neurology team at Perth Children’s Hospital who referred him to various specialists including orthopaedic surgeons, general surgeons, paediatricians, physiotherapists, and many others.
As Zachary progressed through puberty, more surgeries became necessary as the tumours started attacking his spinal canal. In January of 2022, Zachary underwent a very complex surgery to help him avoid paraplegia. While this surgery was a success, it was an extremely difficult adjustment for the whole family. As a result, Zachary now needs to use a wheelchair and become much more dependent on Alexis, not just as his mother but as his full-time carer.
When Zachary was first diagnosed, Alexis wished that she could have met other families with children who had complex neurofibromatosis to see how they functioned in their daily lives. She wanted to know what it was like for them to wake up in the morning, take their medication, and prepare for school. She felt that having this knowledge would have made her journey a little bit easier and helped her to know that she was not alone.
This need for support led her to Kiind. From our location at the Family Resource Centre at Perth Children’s Hospital, our Peer Navigators provided Alexis with connection to other families, emotional support, and gentle reassurance while Zachary was undergoing surgery. By helping Alexis to navigate the complexities of the health and disability systems, Kiind also helped Alexis to feel more confident when speaking to specialists to ensure that Zachary was receiving the best possible care.
Alexis’ favourite thing about Zachary is that he always has a positive outlook on life, no matter the challenges he may face. When he’s not attending school or the many hospital and therapy appointments, Zachary is gaming with Ayesha or experimenting with new recipes in the kitchen. He also has dreams of one day working at TransPerth to pursue his love of trains and mechanics.
Alexis hopes that by sharing her story, she can help raise awareness of complex neurofibromatosis and inspire other parents and carers who are in a similar position to reach out for support when they need it most.