ZOE'S JOURNEY

Hi! My name is Zoe Szaller. I was born on December 20, 2019 in Hungary. During one of my early Ultrasounds before I was born, my Doctor noticed that the fibula in my right leg was much shorter than my left. Back then, no one knew what the difference might mean. After I was born, it also seemed not only my leg is shorter but I have only 4 toes on my right foot, and my ankle is also standing weirdly outward. (The doctors call this position usually valgus.) A few weeks after my birth, my parents took me to the pediatric orthopedics at the Heim Pál Children's Hospital in Hungary. During the 6 weeks hip screening, I was diagnosed with a lower limb developmental disorder. After that my Dad and Mom started to seek the internet to find the best solution for my limb. The couldn’t find any hungarian description but in english they find a disorder called Fibular Hemimelia. (It turned out quickly that I have fibular hemimelia.) One in 40,000 children is born with this disorder it means less than 2 children a year in Hungary. Dad tells me I have to play the lottery my whole life. 😊 My doctor in Budapest is planning several surgeries for me. He said that the first surgery is the super ankle procedure. They will put my ankle to right position with the procedure. After that surgery my ankle is going to be stiff unfortunatelly. After that, as I grow the length difference between my legs will increases, so later they have to perform more limb lengthening surgeries on my bones. The doctor at home was very kind, and helpful with us, supporting us all the way through, even when my dads told him we may look for another options too. (In fact, He proposed that us too!)

After that, Dad joined a group on Facebook. Mostly there are fibular hemimelia parents and families in that group. In the group, we saw a lots of positive feedback at the International Center for Limb Lengthening in Baltimore US. After that we contacted a senior pediatric orthopedic doctor (Shawn C. Standard, MD, FAAOS) in a chat. Since then, we have had several conversations as part of weekly chats. He saw my X-rays. During the last consultation, Dr. Standard wrote to my Dad that my feet are in good clinical condition and with their treatment (super ankle procedure), they can make me a nearly full function ankle. My ankle won't be stiff! The conversation was around 2 a.m. in Hungary. Dad woke me up too… he was so loud in his joy… My first surgery should be done by the age of 2. Dr. Standard described that in his opinion I would need a limb lengthening at the age of 13-14. (At the end of the growing age.) My right limb will be approx 5 cm shorter then. Imagine I can walk now, and to the delight of my parents I never stop. They can’t catch me! 😊 I’ m going on tiptoe a lot with my little foot to balance the difference. Due to the rarity of the disorder, there are few hospitals around the world that deal specifically with the treatment of my disease. My mum and Dad confidence in home doctors but they decided that I need to have my first ankle surgery in the US because it can bring better results. Our doctor at home was very open after that, he said that he also knows the Baltimore hospital and would love to work with them because they represent a high professional standard. Unfortunately, our home insurance does not support that outdoor surgery. The price of my first surgery is 63,000-65,000 USD. Before the virus, I regularly went swimming to get better prepared for the difficult road ahead. We are here now. Mom, Dad, and our whole family are doing their best to get the best treatment! Going to Baltimore for my first ankle surgery could be the next big step in my long journey…

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