GRANDMOTHER Margaret Morton will set out on a 1000km mountain bike ride from Mundaring to Albany this weekend to raise funds for children with a rare lung disease.
The ride along the Munda Biddi Trail is inspired by Margaret’s three-year-old granddaughter Charli from Bayswater, who lives with Childhood Interstitial Diffuse Lung Disease (chILD).
At 12 months of age, Charli was diagnosed with chILD which makes it hard for Charli’s lungs to absorb oxygen and the doctors have not been able to provide a clear treatment plan or prognosis.
Charli’s lung disease has a huge impact on her, her family and the health care system.
The former Stoneville resident’s goal is seeking the community’s support to raise $15,000 for the Young Lungs program.
“Charli is constantly hooked to an oxygen tank and normal everyday activities, like going to the park, are a challenge,” she said.
“It’s amazing to watch her shine brightly through it all and that’s my main motivation.”
Lung Foundation Australia chief executive Heather Allan said Australian children diagnosed with rare lung diseases and their families had limited, if any, access to information, support, treatment and research.
“The diagnosis of a rare lung disease is one of ongoing uncertainty,” she said.
“Without research and the proper support framework in place, these families are isolated and left feeling helpless often having to navigate challenges on their own.
“Lung Foundation Australia is working to raise public and political awareness and funding to establish a dedicated support service through our Young Lungs Program.
“The program will help parents through the common issues they face when their child is living with a rare lung disease.”
East Metro MLC Matthew Swinbourn will be at Mundaring waving Mrs Morton off as she begins her epic ride.
“Having a child of my own with a rare disease, I know how important it is to raise public awareness of rare diseases and the needs and rights of the people and their families affected by them,” he said.
“Community-minded people like Margaret are worth their weight in gold and I encourage people to follow her journey and make a donation,”
Mrs Morton said some of Charli’s medical team would join her for part of the ride, along with good friends and family.
“I encourage the community to show their support and make a donation because little is known about this rare lung disease, so research and support is vital to save the lives of children like Charli,” she said
To donate visit https://give.everydayhero.com/au/nanny-s-ride-for-child.