The Timotheou household’s world was shattered when their younger son was identified with a devastating sickness, however they discovered energy within the Save Our Sons Duchenne Basis.

Melbourne boy Lucas Timotheou was three days off his fifth birthday when docs instructed his mother and father he had Duchenne muscular dystrophy.

Amid the million questions swarming by devastated mum Mary’s head, the primary that shaped into phrases was: “Will my son be in a wheelchair when he’s 16?”

The reply, whereas delivered with compassion and care, was brutally matter-of-fact: “Sure.”

Trying again, Mary thinks it was an odd first query after such heartbreaking information – however  as she desperately tried to course of the enormity of what she’d simply discovered, it appeared nearly as good a spot to start out as any. 

What’s Duchenne?

Duchenne muscular dystrophy is a degenerative dysfunction the place the muscle tissues progressively lose energy and bulk.

It’s the most typical muscle illness of childhood, and impacts round one in 3500 boys. In very uncommon circumstances (one in 50 million), ladies may additionally be identified.

“These with Duchenne are unable to supply dystrophin, a protein wanted for the energy and stability of muscle cells,” Mary says.“With out dystrophin, muscle fibres waste and die.”

Duchenne is brought on by a gene mutation that’s both handed down by the household, or the results of a brand new genetic change within the youngster.

Life expectancy for these with Duchenne is round early to mid-20s. At the moment there is no such thing as a remedy.

• Inspiration: Dad’s mission to discover a remedy for Duchenne

Signs of Duchenne

Signs normally seem in youngsters between the ages of two and 5, and should embrace issue operating, leaping, climbing and getting up.

Different indicators embrace frequent falls, enlarged calf muscle tissues, toe strolling and language improvement.

Muscle tissue first affected are normally these across the hips and higher thigh, and weak spot regularly progresses to muscle tissues used to carry up the backbone, respiration muscle tissues and coronary heart.

By the point they’re 12, most youngsters dwelling with Duchenne lose their means to stroll.

Dwelling with Duchenne

Whereas Duchenne is taken into account a genetic situation, Lucas’s prognosis is spontaneous, that means he has no household historical past of the sickness.

Lucas’ prognosis devastated Mary, his dad, Harry, and his sister, Mia, 13.

On the time all that was noticeably totally different about Lucas was that he didn’t run.

“You assume you’ve acquired this wholesome little boy, then in a single second your complete world is turned inside out and also you’re left to take care of this horrible prognosis,” Mary says.

Now 11, Lucas continues to be capable of take part in lots of actions loved by his friends, however he’s changing into more and more conscious of the hole between his talents and people of his pals.

Whereas they grow to be sooner and stronger as they develop into younger males, Lucas experiences the reverse.

“The problem is now he’s recognising that he’s totally different (to his pals), that he does have restrictions,” Mary says.

“All his mates are on their scooters and their bikes, and he can’t take part. The impact of that has began to influence him emotionally. It’s quite heartbreaking.”

Help by Save Our Sons and the Stroll 4 Duchenne

Quickly after Lucas was identified, Mary got here throughout the Save Our Sons Duchenne Basis, an organisation she now describes as her “life help”.

In addition to offering sensible help for the boys akin to entry to specifically educated nurses and wheelchairs, Save Our Sons supply a neighborhood community of emotional help.

“That’s one of the necessary issues in with the ability to survive this journey, is help,” Mary says.

“I don’t assume I’d be capable of cope on this journey if it wasn’t for Save Our Sons. They offer me hope and energy. Truthfully I don’t know the place I might be with out them.”

Mary, Harry, Mia, Lucas and different members of the family will this month participate within the organisation’s main fundraiser, Stroll 4 Duchenne.

The stroll begins on February 28 and can cowl 186km over 9 days, visiting 11 faculties which have a pupil affected by Duchenne.

“Lucas completely loves the stroll, he’s made many long-lasting pals by doing it,” Mary says.

This 12 months the stroll – which final 12 months raised $1 million – will end at Lucas’ major faculty and he couldn’t be extra proud.

“Lucas is now in grade 6 and everybody on the faculty has his again, everybody is admittedly caring. The help the varsity affords is unbelievable,” says Mary.

To participate or donate, go to Stroll 4 Duchenne.

Written by Claire Burke.