‘I don’t want any more operations!’ It was so hard on me, I decided enough was enough.’: Woman with Apert Syndrome wants people to know, ‘‘I have a great personality if people take the time to get to know me’

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“My mom and dad were excited to find out they were expecting another baby. They had seven girls before I came along. My sisters were also looking forward to the new baby coming. Throughout my mom’s pregnancy everything seemed fine, but when I was born, my mom and dad were told I had special needs. However, they weren’t sure what disability I had, since it was very rare back then. The doctors weren’t sure if I would make it and so I had to be baptized in the hospital.

I had to go to the Children’s Hospital in Dublin a few days after I was born because the doctors there would know how to treat my condition. They did lots of tests and found out I had Apert Syndrome, or the premature closure of the bones of the skull. We spent a lot of time in hospital and in the years following, I had to undergo many big operations. I was only 3 weeks old when I had my first operation and 17 years old when I had my last. I had two major head surgeries so my brain could have room to grow and develop properly. I also had to have surgery in my mouth for a cleft palette and numerous surgeries on my hands since they were webbed. The doctors operated on them to give me fingers and grommets were put into my ears in order for me to hear properly.

All the operations were hard on me and my parents, as I was only a small baby. My mom and I had to do a lot of traveling up and down to the hospital in Dublin. It was hard on my mom and on me, as I would be very sore after my operations and being away from home was so difficult. After my last, I decided enough was enough and said, ‘I don’t want any more operations!’

Courtesy of Antoinette O’Sullivan

I looked different from other babies when I was small so it may have been a shock for my mom, dad, and sisters when they first saw me. They said after a minute of meeting me, they instantly loved me and knew I was just the same as any other baby. I just needed a bit more care and lots of love. I was very much loved and accepted at home.

I was probably about 6 or 7 when I truly realized I was different from other kids. I noticed I looked different. There was a lot of staring, whispering, and pointing fingers from other people, as they had never seen anyone with Apert Syndrome. This made me sad and was very hard for me and my family, especially my mom and dad because they would get upset for me. Some kids in the neighborhood were mean and never included me in anything, which was hard because I just wanted to be like everyone else. They didn’t understand at first, but after a while, they started accepting me and being nicer.

I had to go to the Nano Nagle school in Listowel, which is for children with special needs. I loved it there and went from five until I was 18. I fit in there very well and made lots of friends with the other students, teachers, and SNA’s. I was sad to leave but had to move on to the next chapter of my life.

I then went to college for the Skills for Life Programme for three years with some of my school friends and when I started, I also met some new friends. That was where I learned life skills and to be more independent.

Courtesy of Antoinette O’Sullivan

After this, I decided it was time for a challenge and signed up for a level 5 course in Sports and Recreation, which I knew would be very challenging, but wanted to push myself and show people I could do anything I set my mind to. I passed the course with flying colors and received so much support. It was hard work but so worth it. When it was time to graduate, I was very proud of myself and so were my family and friends.

Outside of school and college, I am a very active person and am passionate about sports. I love walking, cycling, and taking part in marathons, either with my sisters or on my own. I also love going to the gym to do a good work out. After the gym, I liked to go for a swim. I have always been involved in sports and competed in the Special Olympics for many years, winning gold, silver and bronze medals! I also took part in the Empire State Games in New York, where I again brought home plenty of medals, making everyone very proud. When I got home, there was a massive reception at the Kerry County Council where I met with the Lord Major and was presented with an award. It was a lovely day to honor me and my achievements.

Courtesy of Antoinette O’Sullivan

I have had a part-time job in Super Value for the last five years, where I do merchandizing in the sweets and dairy section and sometimes I do some price checking, too. I have to say, I made some great friends there who are very good to me. I love working there!

I have a boyfriend, Jason, and we have been together for four years now. I met Jason in school, and we were best friends for a long time before I agreed to be his girlfriend. We share a love for performing and have been in many plays together through our group, St John of God’s, which is a service for people with disabilities I have been a part of since I was 18.  Jason is autistic and is a caring boyfriend. He is good at drawing and his dream is to become a cartoon artist. We are very much in love and happy to have found each other. We have a great time together going for weekends away or just doing stuff where he lives. I visit him every week and stay over. We go for dinner, play playstation, and go for walks. We are also members of Slimming World. We also love to spoil each other with gifts on special occasions.

Courtesy of Antoinette O’Sullivan

On the 5th of October of 2018, I was invited up to a DRS Management in Dublin Castile where I met James Nesbitt. Little did I know, I was going to get a special award for my upstanding achievements and sharing awareness through my page. James Nesbitt presented me with the award. He said a lovely speech about me, which was so so nice of him. I was very excited and proud. It was an amazing evening. I got two standing ovations! It was a huge surprise, since I wasn’t expecting it.

Although I have my family, friends, and a boyfriend, I still do sometimes feel lonely and would love to have more friends.

I would like people to know, just because I have a disability, I am still the same as them. I have feelings and I have a great personality if people take the time to get to know me. I am a great friend, sister, daughter, auntie, goddaughter, godmother, and girlfriend and am well known in my hometown for my outgoing and bubbly personality. I am super independent and I love to travel on the bus to visit people and places. I love to cook nice, healthy meals. I am very positive and try to live my life to the fullest. I have never let my disability get in the way of achieving my goals.

At the moment, I am studying to do my theory test, as I would love to be able to drive someday and be even more independent. I am big into social media and love sharing my journey with my followers so that keeps me busy.

At times, I do think about what life would be like if I didn’t have Apert Syndrome. I think it might be easier, however, I have accepted myself and love myself for who I am. I want to be a positive role model for people with disabilities and show the world it’s okay to be different. You can still achieve your dreams. I am a much-loved girl by family and friends and that’s what’s important in life — to have people who love you. All in all, life is good.”

Courtesy of Antoinette O’Sullivan
Courtesy of Antoinette O’Sullivan
Courtesy of Antoinette O’Sullivan

This story was submitted to Love What Matters by Antoinette O’Sullivan of San Diego, California. You can follow her journey on Facebook and InstagramDo you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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‘What’s wrong with her fingers?,’ my husband asked. ‘They look strange, but they’re perfect.’ Then he saw her toes.’: Parents surprised by daughter’s Apert Syndrome diagnosis, ‘she just wants to be loved’

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