A MOTHER’s intuition is fierce and undeniable.
When Jacquie Cooper sensed there was something more complex behind her son Leo’s mobility developmental delays, the Soldiers Point registered nurse listened to her instincts and sought help from her local maternal health center.
Advertise with News of The Area today.It’s worth it for your business.
Contact us.
Call us – (02) 4981 8882.
Email us – media@newsofthearea.com.au
Nicknamed “Leo the Lion” since birth, Jacquie noticed that her brave-hearted little boy “was a slow walker and couldn’t climb stairs or run as much as his three-year-old peers.”
It took consultations with several specialists before a blood test confirmed that Leo suffered from a rare muscle disease called Duchenne muscular dystrophy (DMD).
DMD is described as having a “defect” affecting the largest gene in the human genome, the dystrophin gene.
Dystrophin is a protein present in all muscles, providing them with essential functions of shock absorption, stability and repair.
Without functional dystrophin, Leo will experience progressive muscle damage and decreased function and strength in his limbs, as well as his heart, lungs, diaphragm, and smooth muscles used for digestion and swallowing.
Jacquie and Chris had to deal with the grief associated with seeing a different and significantly shortened future for Leo.
Dreams of Leo “doing normal things like riding a bike, trampolining, traveling the world and playing competitive soccer” have been reimagined and right now Leo is purring away “exploring rock pools, playing mini golf, building towers and watching Paw Patrol.”
Admitting to adopting a “head in the sand” attitude after Leo’s initial diagnosis, Chris and Jacquie are grateful to have been encouraged by the community support and the learning, awareness and treatment options developed through association with the Duchenne community.
Jacquie told News Of The Area that amidst this daily “feeling of helplessness”, she felt the need to walk for her son, literally.
Jacquie’s impetus has resulted in a fundraising and awareness event called Lions Walk, which will take place in the wilds of the Tomaree Coastal Walk on Saturday, August 31.
Participants can walk the 26 kilometres (km) for Leo and other members of the Duchenne community, or opt for alternative entry points, walking just three kilometres before gathering for a celebratory drink at Shoal Bay Country Club from 4pm.
Friends of Leo’s preschool have made unisex sizing t-shirts if you can’t make it to 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 vigilance that are amplified when it comes to protecting and raising children.
Jacquie, Chris, Bobby and Leo are looking forward to seeing all proceeds go directly towards finding a cure for this irreversible degenerative disease.
They thank the Port Stephens community for their generosity.
By Jacie WHITFIELD