Ethan Whear suffers from seizures and muscle spasms caused by a rare condition called leukodystrophy. When Satan’s Little Helper was asked to help out, we knew we had to do something for this deserving soul.
Ethan Whear is a little superstar, who can always be found cracking jokes and smiling. However, his happy exterior masks problems, because this is a five-year-old with a body that’s at war with itself. “He has epilepsy, quadriplegic muscle spasms, leukodystrophy and was born with hip dysplasia – although that wasn’t diagnosed until he was one,” explains his mum Amy Whear. In a normal brain, the nerves are protected by a sheath. Ethan’s leukodystrophy means he doesn’t have that protection. The nerves are exposed, which means any knock to the head can be damaging. It has delayed his development and impacts his fine motor skills. Unfortunately, Ethan has daily seizures, triggered by his epilepsy. Those seizures are why he wears a rugby helmet 24/7 to protect his brain if a seizure causes Ethan to fall over. “He used to have 30-40 a day but it’s medicated so it’s down to one or two now,” says Amy. Ethan’s frequent muscle spasms affect his arms and his legs, which forces his body into a state of constant tension. That limits his range of motion and means he’s never fully relaxed. Despite that, Amy says her son is determined to make the most of life. “He starts school at the end of Feb and is super excited. Encouragingly, his speech has developed really well and he can now have full conversations – and he isn’t shy to let us know what he wants!” Leukodystrophy has no cure, so doctors are limited to managing his symptoms. Being in water is one way Ethan can properly relax his muscles, so when Satan’s Little Helper found out about his condition, we decided to get him a swimming pool and some toys to play with. “He goes in the pool every day,” says Amy. “Even if it’s raining, he’ll stand by the window until it stops and then he’ll ask to go in. “His water confidence has increased heaps and the water calms him. Sometimes we’ll hold him in the water, or he’ll use the pool noodles and he’ll float. It helps him sleep better as well, because he’s more relaxed.” Amy’s house is a busy one – she has six kids and a husband running around the place. Luckily, they’ve all been able to make the most of a cool place to relax during the hot summer. “It has been so great for Ethan – and even better that it’s something we can all enjoy as a family. Thank you Satan’s Little Helper!”