Mia's Big Adventure

Mia's Big Adventure This page is to help our friends, family and the wider community keep up to date with Mia's journey with CFD. https://www.gofundme.com/miasbigadventure

Mia's Little Leg, Big Adventure was set up to keep our friends, family and the wider community up to date on Mia's and our family's journey with CFD (Congenital femoral deficiency). It is a page where we will share the highs and lows of our big adventure with CFD and also raise awareness of the condition. Basically what CFD in Mia's case means, was that she was born with a very small femur in her

left leg and a severely underdeveloped hip, making it significantly shorter than her right one. We will be fundraising for Mia to get her the best possible treatment available and this page will provide all the information required for people to help out in anyway possible. Our journey with CFD began at 19 weeks when we went in for our routine anomaly scan. We went in with not a care in the world after being told at 12 weeks that everything looked perfect. That all soon changed when we were told their was a "serious problem" with our baby. What followed was a long month of tears, research and well more tears. We were referred to specialists who confirmed that our baby girl indeed had a very small femur measuring a teeny tiny 0.7cm at that stage. We were told that they doubted it would grow and that amputation would be our most likely option and handed a limbs for life brochure and referred onto a orthopaedic surgeon. In this time I had already diagnosed Mia with CFD through my hours and hours of research and emailing surgeons across the globe. So by the time we got to the surgeon it was no surprise when he told us it was CFD. He told us to continue the scans and see where we were at once she was born. So we continued with scans every 4-5 weeks and each time her tiny bone grew, not much but it grew (those "specialists" were proven wrong!)

Because of all the frantic research we did, seeing her little leg at birth was heartbreaking but not a shock, our little girl was perfect in every other way! 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 severe hip issues also which is on the more severe end of the condition, pushing her type closer to the 1 in 1,000,000. There are certain surgeries that are unfortunately not offered here in Australia at this stage and we want only the best for her which means raising money to get her to the best. The treatment alone costs hundreds of thousands of dollars plus we have to travel and stay in America for a few months. We hope you enjoy Mia's page and we welcome any offers of help big or small.

28/05/2026

💕 Mia on gosh we are proud! 🥹

PB today at NSW PSSA swimming. She shaved 1.42 seconds off of her Sydney East time. I said to her this is your last prim...
28/04/2026

PB today at NSW PSSA swimming. She shaved 1.42 seconds off of her Sydney East time. I said to her this is your last primary school race just push to the end!

She achieved a time of 41.90 and came 7th overall out of the 20+ senior girls who competed today in the multi-class event.

My filming wasn’t great, I was so nervous for her and at the end I was filming but also tapping Brent to be like omg she shaved that much time off her PB.

I know for some it’s not a huge amount but for us and for Mia it’s been a big achievement to keep improving each time, as she’s been battling a lot of pain over the last few months which has seen her miss a lot of her lessons and activity in general.

I get a lot of people asking how the ranking and placing system works. I’ve shared the ranking in one of the slides and you can see how the times vary and it not being as straight forward as the fastest to slowest time. The times get ranked and calculated against the world record time for each classification. So often times the race finish of 1st, 2nd, 3rd is sometimes different from who gets up on the podium.

Mia was the only one with a significant lower limb difference but she did swim against another girl who had an upper limb difference this time. The classifications vary but in Mia’s race today these were some of the main ones s9, s10, s14, s15, s19.

A quick google search explains it better but I will try to post a quick summary in the comments below.

Proud of her today as always.

07/04/2026
Leaving a leg appointment the other day Mia and I were discussing life, I said to her, “you know what I’m just so proud ...
01/04/2026

Leaving a leg appointment the other day Mia and I were discussing life, I said to her, “you know what I’m just so proud of you. How you handle everything, what you have achieved! It could have been so different.”

she said back to me, “I know, I could have not been like this!”

Like this, as in…confident enough to put herself forward for captain and be successful in the role, to speak and talk about her disability with the new kindy cohorts each year, answer people’s questions about her leg with confidence, swim in front of crowds, talk in front of her school. She’s got a great group of friends that she’s made over the years, she’s most of the time (she’s still a typical girl) confident in who she is and all that her story involves. She gives things a go, she pushes through so much pain and frustration when her whole body is screaming at her.

She could have shied away from it all, she could have easily not tried, not pushed, given up.

Today at another leg appointment she told Cam and co that she was leading the Easter Assembly. They asked her, “do you enjoy speaking in-front of people?”
“Yep!” She nodded confidently.
Cam told her what a great skill that was and how so many adults including himself even struggle with that.

We spoke about how we build up so much fear in our minds about what other people will think about us when we do big things and we all agreed though, if you can overcome that worry, it’s one of the best things you can do for yourself.

We have had a challenging few weeks with managing Mia’s pain and frustrations. We’ve butted heads purely out of frustration over the situation. She’s just grown so much recently, her old leg got too small too quick and as a result I think it has thrown her body out a bit but we have a new leg now, adjustments have been made and fingers crossed it means some smoother days for us now…at least until she grows again.

April is limb difference awareness month, so I wanted to shine a light on all that she has achieved. All of that time I worried, all of the times I wondered would she be ok, would she do x, y, z and here she is achieving and proving my worries wrong always! X

Address

Wagga Wagga, NSW
2650

Alerts

Be the first to know and let us send you an email when Mia's Big Adventure posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Mia's Big Adventure:

Share