I’m Laura, I'm 28 years old, and was born with Aperts Syndrome. I’m also a proud member of Headlines' Young Persons Network.
I decided to write my story to share with you all, and to provide parents with a glimpse of what life could be like for your child growing up with Aperts.
I’ve been a part of the wonderful Headlines community all my life, attending some Family Weekends, conferences, meetings and YPN meet ups. I even got invited to go to the Houses of Parliament, to promote awareness of craniosynostosis, and I’ve participated in many fundraising events too. Throughout my journey with Headlines, I’ve met some incredible people, made some amazing friendships, been able to inspire others, and created special memories.
It wasn’t until when I was about 5 or 6 years old that I truly realised I was different from other children. I looked different, I had distinctive characteristics, to my hands, feet, and face, as well as having an unusually-shaped head.
As the bones in my skull were fused together prematurely, they could not expand on their own as I grew, so the doctors told my parents I needed surgery to allow my brain room to grow to its usual size.
I was 1 year and 9 months when I had my first skull operation. I also had to have surgery to separate my thumbs on both hands, inside my mouth for a cleft palate so that I could eat, and grommets were inserted into my ears in order for me to hear properly.
During my early childhood, when I was in reception class, we played 'ring a roses', but I was always left out, as the other children wouldn’t hold my hands. My teacher at the time would always promote and talk about differences in others: different colour hair, eyes, skin, heights etc, and include me in those conversations too. From then on, the other children wanted to play with me more, and allowed me to join in with their games.
Later on in my primary school years, I had many visits to the old Birmingham Children’s Hospital, to have a number of surgeries on my hands. The doctors operated on them, one hand at a time, to give me fingers. I remember my friends at school would sign my cast, and always help me to do certain tasks.
Fast forward to my late teenager years, and after many deliberations, I decided it was time for a challenge, and signed up for a BTEC Childcare National Diploma course at college. I wanted to push myself and show people I could do anything I set my mind to.
I passed the course with flying colours and received so much support from my tutors, family, and friends. I ended up staying on at college for a total of six years, as I achieved and completed a degree in business and management, as well as a Higher National Diploma in Advanced Practice in Working with Children and Families. It was hard work but so worth it - and in 2016 I graduated!
My most recent operation took place during my first few years at college, when I was 18 years old. Some of you may know it as the 'RED frame', which stands for 'Rigid External Distraction'. This procedure was very different to the ones I had in my childhood, because this time it was my decision!
There were so many thoughts going around my head, trying to decide whether to go for it or not. It was a big decision because for three months, I had to wear a metal frame attached to my head with ten screws and a number of pins. It sounds scary and painful, but it wasn’t at all. To help me make up my mind, I remember sitting in conservatory area of the hospital with my mum and dad while the doctor showed us before and after photos of others who had the same procedure done. The difference was outstanding, and that was the moment when I decided to go ahead.
Once I gave the green light to ahead with the surgery, I wanted to share the news with my family and friends. They were all very supportive and intrigued to find out more about the procedure, the process, and everything in between.
It wasn’t an excuse to miss out on college course work, as I was still doing work from home, via email and I did pop in from time to time. Those three months were hard, in terms of getting dressed, washing my hair and face, and not being able to drink properly , as I had to use a straw. But once I got used to having the RED frame on, it became more and more easier to manage my daily routines and tasks.
During the whole process, I had so much support from my family and friends, who would come to visit me at home. Having this procedure done increased my confidence massively, allowing me to inspire other young adults to do the same, and boosted my independence, enabling me to travel more with friends - people no longer stare at me when I’m out and about.
Yes, I have craniosynostosis, and at times I do find life challenging, but I see myself as one the lucky ones.. Yes, I have had to undergo many operations, although I had never been on medication for long periods of time, or taken part in any sleep studies, or been attached to any machines to help me breathe.
You can say through my past experiences, I have developed a mental toughness, strength, determination to solve any challenges that come my way, and an ability to deal with negativity. I always felt that, having gone through what I have endured, I can deal with whatever life throws my way: for example I passed my theory and practical driving test first time round without any modifications.
I’ve also had a number of different job roles, from being a playworker, teaching assistant, to currently being employed as a preschool teacher. I'm fortunate that my job is one of my passions in life.
I used to hate the words 'craniosynostosis' and 'Aperts Syndrome', but eventually I decided that in order to develop my self-confidence, I needed to stop being afraid of those words.
There are moments when I do think about what my life would be like if I didn’t have Aperts. I think it might be easier. However I needed to accept myself for who I am, and those words can no longer be associated with hate or with negativity. It is simply a phrase that describes my medical diagnosis. It does not define who I am at heart.
By sharing my story, I would like to express that everyone is different in their own unique way and goes through life in different ways. If you’re a child, or young person, with craniosynostosis or Aperts, here is a bit of advice from me to you: don’t let your medical condition prevent you from achieving your goals in life.
There will be times where it may be hard, like the endless obstacles and challenges that will come your way, the many hospital visits, and procedures you may need to endure. Be brave, be strong and be positive, show the world it’s okay to be different.
Don’t let your condition prevent you from doing what you want to do or achieve in life!