Young Mia Stewart was born with a rare condition that’s resulted in her having one leg much shorter than the other. To ensure Mia enjoys a full and active life, she requires complicated surgery that isn’t available in Australia. Chris Wright, Mia’s great-uncle, has been busy planning a charity motorbike ride from Port Macquarie to Wagga Wagga – the proceeds of which will help pay for Mia’s surgery and extended stay in the USA…
Hi Chris. Introduce us to your gorgeous great-niece, Mia … How old is she, and what are some of the physical/health issues she’s battled since birth?
Mia is four, and she’s had prosthetics since she was nine months old.
Mia was born with a rare condition called CFD (congenital femoral deficiency). What this means, is that Mia’s left leg and hip are severely underdeveloped, resulting in a much shorter left leg.
CFD is said to occur from 1 in 50,000 births to 1 in 200,000 births, depending on the severity, as there are varying types. Mia’s type of CFD, however, has been diagnosed as Paley type 3A with extensive hip issues. Because Mia’s case of the condition is at the more severe end of scale, she is actually closer to the 1 in 1,000,000 mark.
Mia needs surgery in the USA to help with her condition. What type of surgery will she need, and why can’t she get this treatment in Australia?
Mia is undergoing a rare and complicated surgery called the Paley Modified Brown Rotationplasty. In the simplest terms, this will see her leg turned around 180 degrees so that her foot faces backward, the ankle joint then acts as a knee joint, so that prosthetics work better. At the same time, they will also address Mia’s hip issues (she was born with little to no hip joint); they will take her knee (which is up basically in her hip) and all the other bits that have formed to create a somewhat functioning hip joint. For a deeper description, just head to the Paley Institute Website via Google and search rotationplasty.
This surgery will give Mia the opportunity to enjoy an active and full life! At a cost of $300,000, the surgery isn’t cheap, plus the stay of eight weeks added on top. We want Mia to receive the best treatment, and unfortunately that just isn’t offered here for her specific case.
Mia’s condition is very rare. It’s simply a numbers game, because cases like Mia don’t happen very often and our population size just isn’t great enough to warrant the experience in a case like Mia.
You’ve raised some funds already – who are some of the people/local organisations you’d like to thank for their support?
So far we would like to thank some of my customers at Mitre 10 who have kindly donated cash to Mia, and also to a very close friend, who made a massive personal donation of $2,000.
There’s another big fundraiser planned for October 4 – 7: a charity motorcycle ride from Port Macquarie to Wagga Wagga. Who can take part in this event – and how will it work?
We would encourage as many riders as possible to take part. If we had 20 plus, I would be very happy.
We will start out from Port Macquarie on 4th October and travel to Newcastle, where we will stay overnight. We then continue from Newcastle for day two, which will see us travel to Cronulla. Day three will be Cronulla to Goulburn. There will be an overnight stop at Goulburn, with day four seeing us terminate at Wagga Wagga, with a gathering at a local hotel.
If anyone wishes to ride all four days, it will cost $60. Accommodation etc. is up to individuals to arrange. Please also note that riders can just ride down for the Sunday run into Wagga and pay $20. We leave Goulburn at 09:30 from the Big Merino.
You’ll be riding a pretty special motorbike for the event; can you tell us a bit about it?
We have been very lucky to have Sydney based business “Just Jap auto” sponsor us with an ex NSW Police motorcycle, a YAMAHA FJR 1300. This business deals with ex Police to the public and can be found at:
Where can people register for the ride or find out more info?
Head to the Facebook page “BEACH TO BUSH FOR MIA” for bookings, or turn up and pay on the day to ride if you are unable to commit. However, it is free to sign up an interest. Call my mobile
0458 143 312 if you have any enquiries, or message us through the Facebook page.
If people are not able to take part in the ride, donations are welcome! All donations raised will go towards the cost of surgery in America. Local charity SMRF (Specialist Medical Resources Foundation) has allowed us to raise money under their banner and have set up an offset account for Mia. This means all donations are tax deductible, a great bonus for businesses!
Specialist Assistance Fund
BSB: 633 000
Reference: Mia’s Big Adventure
For receipts email: email@example.com
*Please remember to use the above reference for donations so that it goes to the correct account.
Interview: Jo Robinson.
Pic top left courtesy of Matt Attard, Port Macquarie News.