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Lucas was born looking perfectly healthy, and he reached all of his milestones in the early years of his life. However, when his mother Mary noticed that he was unable to run, she knew something wasn’t quite right.
The Timotheou’s are a very close, loving family. They stick together, and enjoy every minute they have with one another. Harry and Mary are parents of two, Lucas is 9 years old, and his sister Mia is 10. They are an extremely happy family, and the only thing that challenges them is Lucas’s concerning condition.
When Mary first expressed her concern to Lucas’s doctor about him not being able to run, she was told she was being “an over reactive mother” thinking he was perfectly fine.
Mary decided to take it on herself and make an appointment anyway, and it was within those first 5 minutes of a physical examination that the neurologist diagnosed Lucas with Duchene Muscular Dystrophy. This disorder affects 1 in every 3600 boys, causing muscle weakness and wasting.
Lucas was diagnosed 3 days before he turned 5 and although there is a very large worry for his future, his current situation is good. He loves sports, especially soccer, and all things outdoors. Mary describes him as “a gentle, loving character with a very comedic personality”.
Currently Lucas uses an electric scooter to get around school and a wheelchair when they’re in large shopping centres, but other than that he is an able, happy little boy.
Whilst Mary has made it her mission to be extremely positive and give back to the community in any way she can, she has noticed how much Lucas’s condition has affected his older sister Mia. Mia misses out on some of the activities she loves, ones that Lucas can’t keep up with.
But what affects Mia most isn’t missing out on things, but the idea of missing Lucas. As a protective older sister she is constantly worried about Lucas, always asking her parent’s things like “who’s going to dance with me when Lucas is in a wheelchair?”
“Mia has a very tight bond with Lucas. From the day he was born, they just had each other’s backs, they are best friends, partners in crime and they think about each other all the time.” Says Mary.
Mia has become very fond of Very Special Kids Sibling Days and has made a very special friendship with another girl Isabella, who is facing similar challenges, and they have a bond that Mary says “will last a life time”.
Very Special Kids’ Sibling Days aim to provide a supportive and safe environment where siblings can choose to give voice to their feelings. A therapeutic framework allows children to not only explore their emotions, but also enhances self-esteem, encourages peer support and reduces the sense of isolation often felt.
Although Mia’s other friends are supportive, Isabella can relate on a deeper level and together they feel understood. “For a 10 year old, Mia has become exceptionally aware of people’s differences, and her volunteer from Very Special Kids was the perfect mentor for a young girl” says Mary.
Mary’s Family Support Practitioner also stays in constant touch, and even though Mary is positive, it is nice to have someone that always checks in.
“If I ever have any worries I know I can pick up the phone and Kevin will be there. Very Special Kids are one of the most amazing organisations and the only one that really helps us”.
Whilst Lucas is okay now, the whole family is aware that one day he won’t be. As a little boy who loves soccer more than anything, Mary says it will be “heartbreaking when he realises his muscles won’t allow it anymore”.
Mary’s courage and hope however, never falters – “I will do everything for the kids, for Lucas. I’m not going to stop, I’m going to keep fighting for boys with Duchene until my last breath.”
It costs $7 million per year to operate Very Special Kids, with all services free-of-charge to families. Please help us continue to support families like the Timotheou’s by donating to the Very Special Kids Piggy Bank Appeal.
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