Mia's Big Adventure with PFFD
Meet Mia! The beautiful blue eyed, curly haired, amazing little girl. She has a spirit that radiates through to everyone she meets. She captures the hearts of everyone she encounters, an old soul who is incredibly wise beyond here tiny 3 years. “She’s been here before,” is something we have heard from many people after they meet Mia. If you ever get the chance to meet her you will see how much spirit one little human can radiate and it’s that spirit, that we believe she has in her, that will help her tackle all that life has in store for her.
Mia fought her way into this world after a long 41 hours! From the moment she let out that first cry, we knew we had a little fighter on our hands. You see we already knew she would stand out from the crowd because at 19 weeks we found out that not only were we going to be having a little girl but that our little girl was going to be born with a difference. The room spun and our lives were forever changed from that day forward! After further scans revealed that our baby girl was going to be born with a significant limb difference, we set out to prepare ourselves and our friends and family for what was to come. She was going to be rare but during those early scans we weren’t aware of how truly rare she would end up being!Mia was diagnosed with a rare congenital limb difference called PFFD (Proximal femoral focal deficiency) or CFD (congenital femoral deficiency) before she even made it earth side. The amount of research we did in the months leading up to her birth was crazy, we emailed globally in search for more answers and we are forever grateful and still in contact with many families in the same or similar situation.
PFFD is a rare non-genetic birth defect. Little is known about it, there is no kown cause…it’s just one of those things, fate…call it what you like. It’s said to occur in 1 in 50,000-200,000 births. Mia however is more like 1 in 500,000-1,000,000 because not only is her femur very short and underdeveloped but she also was born with no hip. At this stage we have found no case in Australia as severe as Mia’s.
As a result, we have decided after much consultation with numerous surgeons here who have said they can’t help us, that our best option was to look outside of Australia to a world-renowned limb surgeon called Dr Dror Paley. We met with Dr Paley when he visited Australia and he recommended the best course of action for Mia was to perform a complicated surgery called the Paley Modified Brown Rotationplasty. This surgery is a complicated 12 hour surgery that will see Dr Paley create a functioning hip and rotate her leg 180 degrees so that her foot is facing backwards and the ankle then acts like a knee joint. This of course is the simplest explanation and you can find a more detailed explanation at www.paleyinstitute.org/orthopedic-conditions/congenital-femoral-deficiency/rotationplasty
As you can imagine surgery in America comes at a cost. Currently we are looking at roughly $344,000 AUD in medical costs, plus a 9-10 week stay in West Palm Beach, Florida which is where The Paley Institute is located. It is a dollar figure that we could never imagine but a figure that we have been given in order to give our daughter the best chance at living a full an active life.
We are not ones to ask for help but with such a huge sum of money to raise by early 2019 we simply have no choice, no matter how uncomfortable it makes us to ask for help we have to do what we have to do, so that Mia can get the treatment she deserves by a surgeon who not only knows about her condition but that is confident in treating her and has performed this surgery before and can give us evidence of that.
Our goal is to raise a minimum $300,000 and we hope that the extra medical costs, travel costs etc for the 9-10 week stay will be something that we will hopefully be able to cover through loans, credit cards and so forth.
So far, we have been incredibly lucky to have the support of so many people who have put their hand up to join Mia’s Big Adventure. We are beyond thankful to local charity SMRF for taking us under their wing and giving us a platform to raise money and be able to offer people tax deductible donations. They have been a great support and we cannot thank them enough for jumping onboard this crazy rollercoaster ride and giving us a lifeline to be able to raise such a huge amount.
We never in our wildest dreams could have imagined that this is what life would have instore for us and our beautiful first-born baby girl. If someone asked you to put a price on your or your child’s ability to walk could you? That’s the position we are currently facing, a figure that weighs on us every day!
If you are willing, able and would truly like to see the difference your money will make to a little girls life then join Mia on her Big Adventure…
The money you donate will be used for:
-medical costs (surgery $250,000USD + physio $6600USD)
If by some miracle we manage to raise more than the $344,000AUD that we need for medical costs alone, the extra will go towards…
-Additional travel expenses for our 9-10week
If you can help in any way, we will be forever grateful no matter how big or small your donation. We would be so appreciative if you could share Mia’s Big Adventure to your friends and family also. Our long-term goal after all of this is over, is to hopefully start our own charity so that we can provide support and help for other families who experience rare limb differences that may not be treatable here in Australia.
For us this is purely a numbers game. Australia simply does not have a large enough population that sees cases like Mia enough, as a result there is little experience in these severe and rarer cases of PFFD/CFD. We would not be travelling to America if we did not have to, we would not be asking for help if we did not have to. As I say for us it purely comes down to numbers and we just don’t want Mia to be an experiment when she doesn’t have to be and I think most people would do the same thing if they were put in such a situation.
You will truly change a little girl’s life and we can’t wait to share with you the day when she is up and walking after this surgery.
Thank you from the bottom of our hearts Brent, Leila, Mia & Andie xxxx
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As always thank you for your support and if you could share Mia's story we would love that. You can also check out her progress on Facebook & instagram @miasbigadventure!!
If you can keep sharing Mia’s story with your friends and family we will be forever grateful x