I was born with a genetic condition called “Hurlers Syndrome,” which most people are unaware of, it’s because of this condition that I have this hip problem and why at the age of nine months old, I underwent a stem-cell bone-marrow transplant. Throughout my childhood, people told my parents that I wouldn’t amount to much in life and that I would always struggle with walking and will end up in a wheelchair, so why should I try my best in everything I do; I’ll tell you why – I am a very determined person and I hate being told I can’t do something so I do things to prove people wrong because they don’t get to be the judge of what I do, I’m the only person who can judge that.
In addition to the genetic condition, I also had Scoliosis and a hip condition called “Hip Dysplasia”, and both of these conditions have had a significant impact on my life because they have prevented me from playing like other kids in my class, running fast, and climbing on playground equipment like they could.
For a child, this would be like the end of the world not being able to play normally, and believe me, seven-year-old Emma was no stranger to that feeling.
I had major spinal surgeries from the time I was seven years old to when I was 12, and as a young child in a hospital, it was terrifying. All I knew was that I had to have these surgeries to heal my back, but it was difficult, it was particularly difficult when I had to go back to primary school because children didn’t know how to act around me because they heard that I had been in the hospital.
I had trouble catching up on my schoolwork, and my school wasn’t really set up to assist a kid like me nor did they genuinely want to, but trust me, I was grateful for the little things in school, like how I was really good at English and story writing (ironic considering I am a journalist now ), and how I did have a couple good friends who really made a positive impact; there are two memories I will always remember from primary school because they serve as a reminder that there are some good people in this world
The impact of a gift
When I had my first major scoliosis surgery, a friend of mine visited me at home after I got home from the hospital. He and his mother had bought me some colouring books, sweets, and these pink Hello Kitty bubbles; though they were small gifts, they meant a lot to me because they showed me that at least one of my schoolmates was thinking of me and that I wouldn’t be on my own when I went back to school, another memory was when I was 11 years old, I had this one friend who I used to play a word game with at every lunch break, I remember after having surgery on my legs, she wrote a get well soon card and sent it to my house, and on the card, she had started the game again and said she couldn’t wait until I was back in school; this meant the world to 11-year-old Emma because it meant that there was someone who didn’t find me weird, they actually considered me as a friend, I won’t ever forget about either of those people because they both in different moments of my childhood made me feel less lonely in school.
As much as I am grateful for those nice memories, there are also sad ones, and I am well acquainted with them. I will admit that while the majority of my teachers made an effort to help me with my schoolwork, a few didn’t want to, and that was a big problem because no matter how hard I tried to keep up with my studies while in the hospital, it wasn’t enough; when I went back to school, I struggled with it and my teachers would give up after a few weeks, which made me feel stupid. However, now at the age of twenty, I realised that it was their fault for not providing me with enough support with it, not mine.
In a school full of young children, some were friendly to me and some were just outright rude, and there were a few instances of this and one that I will discuss is how a young girl called me ‘crooked legs’. When that happened I was really upset because I had never spoken to her before; but she believed it was okay to say it, because she didn’t know me. Believe me that impacted Younger Me in a way I can’t explain; but now that I look back on it it has made me a stronger person, because I now know that people’s opinions or views of me don’t matter, all that matters is how I see things.
These were some of the hardships of my life but this was my life and I knew I was different because I walked with a limp and people would see right away that I had a “problem,” but that doesn’t mean that the stares didn’t make me feel uncomfortable. They always did, but being the person I am, I didn’t talk about it. Even as an 11 year old I knew there was actually no point in talking about how I felt about the staring because nothing was going to change, especially with pre-teens as they’d do what they wanted and I just had to stick it out. In doing that it has helped shape me into the person and writer you know today.
Being an activist for the Irish Traveller and Disabled communities and having my work published are just a few of the things I’ve accomplished at the age of 20 and I’m grateful to everyone who has given me the chance to grow because they saw me as a person and didn’t assume that I couldn’t do anything because I use a wheelchair. Because it shouldn’t matter whether a person has a disability or not; we can do as much as anyone else with a little extra support.
The hips
This brings me on to talk about what I am struggling with right now; I have struggled with the constant wait of a hip replacement for a very long time and I’m getting tired of being in constant pain and not knowing when my surgery will be done.
I have been waiting for a double hip replacement for ten long years, and I am aware of the current healthcare crisis. However, what frustrates me is that the doctors have known since I was very young that I would need a hip replacement, but initially they advised waiting until my bones stopped growing, which is understandable, but I stopped growing when I was 16, and then COVID19 happened, which put a halt to everything in the world.
However, even now, in 2023, my doctor was moving to a different hospital, and when they tried to move me to a new surgeon, but I could not get one, because my hip bone is smaller than average. They finally found a surgeon who would do the surgery a few months ago, but I have yet to meet them, and when I call the hospital for an update on the appointment to meet them and to discuss the surgery (at least once a week, keep in mind ), we have been unable to make contact.
This surgery which will have such a positive impact on my life, because it will allow me to be more independent and not have to worry about being in pain. The sad truth of the matter is that I have never gone a day in my 20 years of life without experiencing hip pain or discomfort, I would love to experience that some day soon, to be able to do whatever it is without that constant worry of being in pain or moving a certain way and breaking my already weak hip.
I am writing this story to hopefully raise awareness of how it feels to be waiting for what seems like an eternity for a surgery like this. If my surgeon is reading this, please help me and carry out this surgery and not make me wait any longer in pain. Please give me the chance to live my life, and take the opportunities I deserve, but cannot accept right now because of the uncertainty of when the very important surgery will finally happen.
I am a proud Irish Traveller and Disability activist, but I try to do more work for the disabled community because I am aware of how difficult life can be when you have a disability.
I fight for the necessary changes to make Ireland more inclusive and accessible for the younger generation, which includes my three-year-old nephew, of whom I am incredibly proud of.
If I can make this country a little easier to live in, so they will not have to struggle to fit in into an inaccessible society like I have, then that is my goal accomplished.
