Levi was born a beautiful healthy baby, adored by a big brother Jack and two proud parents. The first year flew by gaining our milestones along the way, except one in particular.
Levi at 9 months old would walk aided by furniture or a hand – never alone. And by 14months, we had a significant worry that, he could not walk and seemed a little weak while standing, he was unable to do some previously learned climbing and riding activities – something was not all well with Levi and we began a grueling seven month journey seeing doctors, hospitals, specialists and alternative therapies in order to find out what was causing this.
We left Cairns and drove to Perth to spend time with family and continue to seek help for Levi who was diagnosed by a Neuro doctor at the children’s hospital in Perth that he had Metachromatic Leukodystrophy or MLD – a rare, hereditary, neurological disorder never before seen in either parents families. Diagnosis was discovered after several blood tests and elimination of a possible diagnosis of Spinal Muscular Atrophy or SMA.
Nothing can prepare a family for the news, coming from a solemn doctor of many years experience, telling you that your son has an incurable illness and, with medication and some therapies, to provide a comfortable short life is your only option. After the inevitable living in a dark and surreal world for what seemed like an eternity, 6 weeks on, we started to live again with MLD. Yes of course there are positives out of this experience, but it still seems a bitter sweet way to learn to live life with more compassion and more living to make the most of what you may never have.
Levi is an absolute gem of a boy, and is always noticed for his good looks, and gives immense pleasure to those lucky enough to get a smile or join in a laugh with him. His brother Jack is the best big brother Levi could ever wish for and together they have made quite a team in learning to live with MLD and we often take direction from them. It has introduced us to another world of exploring the medical world and along the way we have made some tremendous friends, learnt, shared and loved each other more than we could have imagined. One significant lesson learnt is learning to slow down in a hectic world and go at a pace that is manageable for Levi and the rest of us, allowing us to enjoy and savor some very magic memories.