Have you heard of Fibrodysplasia Ossificans Progressiva, more commonly known as FOP?
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Only 19 people in Australia have been diagnosed with the rare disabling genetic condition and one of those 19 includes Portland girl Keely Sheehan.
The nine-year-old was diagnosed two years ago at just seven years of age when she developed a limp.
FOP is a progressive disease that causes bone to form in muscles and other soft tissue leading to a restriction of movement and currently has no treatment or cure.
"Keely is in year three at school and is a happy, strong, fiercely determined girl who fights hard not to let this disease stop her from all her adventures and happily enjoying her everyday activities," family friend Brooke Whitelock said.
"Unfortunately Keely has a long road ahead that involves specialised doctors, travel and a lot of equipment in the future to help her live comfortably and keep her beautiful smile going."
In helping Keely and her family the community has put on a fundraiser event to help with the costs associated with her ongoing medical appointments as well as a small percentage going to FOP Australia and Westmead Hospital.
As Keely was starting to get questions from other students about why she looked different to them, the family believed this was the right time to raise awareness about this disease.
On Saturday, December 5 there will be a 12 hour run and cycle relay taking place at The Foundations in Portland between 7am and 7pm.
The 12 hour relay will consist of two runner and two riders and one of them has to be on the track at all times.
At 11am Keely will be doing a loop of the track, and while not being up to walking it there will be a surprise in store.
Everyone is welcome to attend and walk the 3.5km lap in support for a gold coin donation.
"The loop around is great for all ages, groups, families, all fitness levels and can be done just once or as many times as you like," Ms Whitelock said.
"We would love everyone to come and join us on this extremely special day for TeamKeely."
Keely's school friends, netball team, swimming club and old pre school will all be coming to walk a loop for Keely.
The netball team will also be running a barbecue on the day with all proceeds going to Keely.
Coinciding with the event will be the first night markets back at The Foundations post COVID-19 restrictions, they will also be running their annual Christmas markets on the night.
There will be up to 50 stalls allowed, so something for everyone.
The Twilight markets will start between 4pm and 9pm with live music, food trucks and a great atmosphere.
You can follow the event Facebook page here for more information on getting to know the relay team, how your business can become a sponsor, how you can donate, event details and everything else you need to know about this amazing 24 hour mission.
Ciara Bastow
Hi! I'm Ciara and I've been working as a journalist for a number of years now, covering everything ranging from council, human interest stories, community news and sport. Got a story? Email me at ciara.bastow@austcommunitymedia.com.au
Hi! I'm Ciara and I've been working as a journalist for a number of years now, covering everything ranging from council, human interest stories, community news and sport. Got a story? Email me at ciara.bastow@austcommunitymedia.com.au
