Words by Leila Stewart
Travelling to the US and visiting Disney World is an adventure many parents have with their children. For our family, Disney World was just a side trip to what would be the biggest adventure of our lives.
Major life-changing surgery for our 5-year-old daughter Mia was the catalyst for our journey to America. While pregnant with Mia, we learnt she would be born with a rare limb difference called proximal femoral focal deficiency (PFFD). Her severe version of PFFD means she has an almost non-existent femur and no functioning hip socket. The chances of having a child born with Mia’s type of PFFD is 1 in 500,000 to 1,000,000, leaving me feeling extreme loneliness despite the support of family and friends.
We spent Mia’s first year in a haze while endlessly researching treatment and specialists across the world who may offer assistance. Dr Dror Paley, a US-based specialist, was recommended by many in PFFD support groups, so we made an appointment for Mia while he was in Sydney. He agreed with a local surgeon that Mia needed paley modified brown rotationplasty, a complicated 12-hour surgery that would see her leg turned around 180 degrees. This would leave her foot facing backwards, her ankle joint would become her new knee, and her knee and little bits and pieces would be turned into a functioning hip joint. This surgery is not performed in Australia. The cost of it would be $300,000, for which there is no government support.
When Mia was little, we started a Facebook page called Mia’s Big Adventure, which sums up the process from research to fundraising to surgery. Raising $330,000 involved the support of local charity Specialist Medical Resources Foundation in Wagga Wagga, sausage sizzles, cake stalls, market days and black-tie balls. Kindness and support came from far and wide, leaving us overwhelmed by the generosity.
In December 2018, we set off on Mia’s Big Adventure, with flights donated by Delta Airlines. She was still wearing the foot-on-foot prosthetic that had enabled her to walk freely since she was 2 years old. We’d heard varying stories from others about clearing customs with a prosthetic leg – some good, some bad. Mia decided not to wear her leg, so I put it in my carry on and it proved easy, with security waving us through once I explained.
To break up our journey, we stopped in Los Angeles for a few days. Travel with two kids has its moments, but we used a stroller to help with tired little legs. When we travelled from Los Angeles to Florida, Mia was wearing her leg and security at Los Angeles International Airport asked her to take it off so they could swab it and scan it. Her little face looked so worried, but we assured her everything was okay, and the security team softened the experience by handing the girls some stickers.
When we told the girls we were travelling to Florida, we promised them we would go to Disney World. I’d never really been desperate to go to a Disney park when I was growing up, but walking into Magic Kingdom for the first time and seeing the castle was pretty special.
Mia struggled with walking long distances and so did her little sister, so the special tags from the customer service desk meant we could take the stroller through or right up to the gates of rides. We had a magical time at Disney World and we will definitely try to get back there when the girls are a little older.
After a magical week at Disney, we headed to West Palm Beach for Mia’s surgery. The time in hospital was probably the hardest week of our lives. We thought we were mentally prepared for what was to come, but I don’t think anything could have prepared us for the true reality of it all. Mia’s surgery went from 8am to 8pm, and she came out so puffy and agitated. I had a very real moment while sitting next to her, seeing her little leg that was now backwards, of wondering what in the world we’d done!
She made it through hospital, through the cocktail of drugs, the hyperbaric chambers and all the poking and prodding like a champ. We stayed at Quantum House (similar to Ronald McDonald House) for 10 weeks during Mia’s recovery. It was a wonderful place that was hard to leave; it was so lovely to be surrounded by people who truly got it, as they were all going through similar experiences.
For our return trip to Australia, we opted for Delta Comfort Plus to give Mia – and the rest of us – that little bit of extra leg room for the nonstop flight home. We couldn’t fault Delta Airlines; we gate-checked the stroller and Mia’s walker and received priority boarding. Three flights made up our journey home and we were grateful the process was so smooth.
It all seems a blur. Now we are back to physio and getting Mia fitted for a prosthetic. We’ve loved sharing Mia’s Big Adventure with others. Our mission has always been to support other families and educate the greater public about limb difference. Mia has an infectious smile and a ‘never say die’ spirit, and we are totally in awe of how she takes everything in her stride. Our health system is great, but sometimes you have to go with what you think is best for your child and do everything you can to get them to where you believe they need to be – even if that means travelling for surgery.
This story first appeared in Travel Without Limits magazine. To subscribe to the magazine, click here.