When Jacquie Cooper sensed there was something more complex behind her son Leo’s developmental mobility delays, the Soldiers Point registered nurse heeded her instincts, seeking help from her local maternal health centre.

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Known as ‘Leo the Lion’ from birth, Jacquie noticed her brave hearted little boy was “slow to walk, and that he couldn’t climb stairs or run equivalent to his three-year-old peers”.

It took referrals through a number of specialists before a blood test confirmed that Leo had a rare muscular disorder called Duchenne Muscular Dystrophy (DMD).

DMD is described as having a “fault” affecting the biggest gene in the human genome, the dystrophin gene.

Dystrophin is a protein found in all muscles, providing them with essential shock absorbing functions, stability and repair.

Without functional dystrophin, Leo will experience progressive muscle damage and decreased function and strength in his limbs and also his heart, lungs, diaphragm and the smooth muscles used for digestion and swallowing.

Jacquie and Chris have been processing the grief associated with envisioning a different and significantly shortened future for Leo.

Dreams of watching Leo “do normal things like ride a bike, trampoline, travel the world, and play football competitively” have been reimagined and for now, Leo purrs “exploring rock pools, playing mini golf, building towers and watching Paw Patrol”.

Admitting to a “head in the sand” response following Leo’s initial diagnosis, Chris and Jacquie are grateful to have been coaxed along by the community’s support and the learning, awareness and treatment options being developed through association with the Duchenne community.

Jacquie told News Of The Area that within the daily “feeling of helplessness” she felt an impulse to walk for her son, literally.

Jacquie’s impetus initiated a fundraising and awareness event called Lions Walk, which will roll out over the wilds of the Tomaree Coastal Walk on Saturday, 31 August.

Participants may walk the entire 26 kilometres (km) for Leo and others in the Duchenne’s community, or opt for alternative entry points, completing as little as three km before convening for celebratory drinks at the Shoal Bay Country Club from 4pm.

Leo’s preschool friends have been making unisex sized t-shirts if you are unable to attend the walk.

Direct donations are also possible via the links in the ‘lions.walk’ bios on Instagram and Facebook.

Jacquie hopes to encourage others to follow the intuition and alertness that’s amplified when it comes to protecting and raising children.

Jacquie, Chris, Bobby and Leo look forward to seeing all proceeds raised going directly towards finding a cure for this irreversible, degenerative disease.

They thank The Port Stephens community for their generosity.

By Jacie WHITFIELD