Thanks to ToyBox International and Variety WA, 4-year-old Levi is able to experience the joys of water, warmth and weightlessness from his very own home.
At the tender age of two, Levi was diagnosed with the degenerative neurological disorder, Metachromatic Leukodystrophy (MLD). A rare, inherited condition, MLD affects muscles, nerves and behaviour, and is sadly incurable. And for Levi’s family just reaching the diagnosis was a long and arduous process. His mum, Samantha, explains.
“Levi was just over two-years-old when finally diagnosed. I had noticed changes at age one, and six-months later a paediatrician appointment led to a double testing of his blood and urine. We were then sent to a neurologist who did the same tests. A move from Queensland to Perth involved more waiting and the same test again. And fourteen-months after that we finally received the diagnosis of MLD.”
For Levi, MLD prohibits his nerves from sending messages from his brain to his muscles, resulting in severe muscle wastage. Levi is therefore completely dependant upon others for all functions of life, and his breathing is often compromised. Unable to eat, he receives nutrition through a feeding tube inserted into his stomach. He is without most of his vision but still aware of his surroundings and family interaction.
Since birth, Levi has had two constant loves, the outdoors and being in the water. Regular hydrotherapy spa sessions have proved hugely successful in helping his body to relax. Medically speaking, the warm water used in hydrotherapy increases blood flow, stimulates endorphins and promotes the natural feeling of well being, whilst buoyancy helps reduce muscles and joint pressure – all very beneficial for little Levi. Sadly though, Levi’s regular spa sessions has to stop when it was no longer safe for him to travel by car.
Thanks to ToyBox International and Variety WA, Levi has been given his very own hydrotherapy spa and his parents are beyond thrilled to be able to continue this relaxing, healing experience for their child. Older brother Jack shares their enthusiasm, and hydrotherapy has now become a treasured family pastime – especially given it’s one of the few activities they can enjoy together.
“As a family it provides a huge sense of relief and satisfaction to be able to give a quality of life to Levi, with the help of grants made possible through ToyBox and Variety.
Making life more comfortable for Levi makes it easier to think we are your everyday, average family; hanging out, and loving what life is to bring rather than not bring,” says Samantha.