Hello everyone my name is Kristy, I am 25 years old and here is my Moebius journey so far. At birth there was an immediate detection that something wasn’t quite right but Doctors could not determine the condition or cause. Crying would look almost mask-like and feeding was very difficult to begin with. This put a massive strain on my parents as they wanted to do something but didn’t know how. My Mother attempted to feed me from a bottle so I didn’t need to be put onto feeding tubes, she carefully squished my cheeks together so I could drink from the bottle and miraculously it worked
At a few months old my Mother was waiting in a local hospital for my ophthalmology appointment. A South African doctor from a rare disease clinic walked past and by fluke spotted me in the waiting room and expressed we see her and her team after our appointment. My Mother went on to take me into a room full of specialist consultants and I was given a diagnosis straight away. This was fate.
My parents wanted to know more information so they asked what the worst case scenario could be and her response was that I could have brain abnormalities, I may not be able to walk, hear, speak or even become blind. This came at a total shock.
I wore hearing aids at a young age due to glue ear and was visited at primary school by hearing specialists to monitor my hearing during the school day. At the age of two I had a grommet operation which unfortunately failed. It was then later on re-attempted at the age of seven via a different hospital, so I could hear independently without hearing aids. This operation was finally a success. I would also regularly attend a speech and language specialist to help with my speech development because of the limited mouth movement from Moebius.
I was put in touch with a plastic surgeon at a young age who offered to perform smile surgery if my parents were interested. They took a year to respond and finally decided that it was my choice to make when I am old enough. As time has gone on I have given much thought on my decision and the outcome was to not go through with the surgery. I am happy the way that I am.
School/further education/career-
School life was fairly normal for me in primary education, I had support when necessary and made some life long friends. Transiti
oning to secondary school and finding my feet as a teenager was an experience, however I’m sure it was for most. I missed a chunk of education due to attending many hospital appointments, I was not the best academically either but ploughed through it all and got to the other side with good enough grades, a few I had to re take and defeated the odds with some others. There were times when barriers did occur but with a strong mind set, great set of friends and an amazing support network around me I was able to knock these down and carry on, even if it took longer than expected!
I would be lying if there wasn’t moments through these years where comments or prejudgments were made, but I always remembered at the back of my mind the phrase ‘Kill them with kindness’ because the truth be told is that kindness will and always win.
Growing up I attended many different extra curricular activities, it was a great way to not only have fun but to have many different interactions with other children which helped a lot with my confidence/character building. I was involved in many shows, club exams, day and camping trips which placed me sometimes out of my comfort zone but I persevered with encouragement.
My parents made the decision to not tell me that I have Moebius syndrome, whether it was the right or wrong decision there isn’t an answer for that. I knew from when I was young that there wasn’t something quite right but I never let it faze me or neither did my family, they let me be who I am freely and didn’t wrap me up in cotton wool. I am thankful for this, they made me feel like anyone else and didn’t stop me in my tracks second guessing if I should or shouldn’t do something just because of my condition. As I got older I started to discover Moebius and researched about it myself, my parents were here for me with any questions and queries I had of which they could answer, it took me some time to really take it all in and accept whole heartedly the way that I am, but remembering how far in life I have already come and all the amazing adventures that await, all still being that same old me who has been doing everything she could possibly do up until this point, really doesn’t change a single thing about me. Moebius doesn’t change the way that I am, it makes me who I am.
As the years go on I took further education in the early years sector, I knew as a teenager I wanted to give back to the community and help/support others just like I was as a child and work with children as a career. I stuck to my plan and next year being 10 years in the profession, I have never looked back since.
I found a big love for travelling around the world and exploring new places, this has given me such a purpose in life and I wi
ll continue to seek as many travelling opportunities as I possibly can, this has been a great way to gain immense independence. Travelling also gives me so much peace within, it is my happy place.
I embarked on an extraordinary adventure last month travelling to Kenya, first time as a solo traveller with a volunteering programme teaching in the Riruta slums located in the heart of the capital ‘Nairobi’. I volunteered in local primary schools and supported orphanages where there is a serious problem with children affected by HIV and AIDS. The experience was like no other and has taught me so much about life giving me a whole new perspective. I am so thankful for my life, it hasn’t been the most plain sailing however, I could be in many other positions right now so I am extremely grateful for what I have.
At this present time life is good and fulfilling, I have a great support network around me, incredible friends and family. I currently work in central London as a Nanny looking after three children and have been fortunate to travel with them, I solo travel, I am very independent and I love to be social!
I am thriving and continuously pushing myself to be the best that I can possibly be, Moebius will not stop me and shouldn’t stop me even if some people may prejudge, I will just keep being me proving whoever wrong.
There are some bad days amongst the good that can be tough, however the good will always override the bad and life goes on. It is not always going to be rainbows and butterflies and I get that, surrounding yourself with loved ones and all who care for you immensely will truly be all that you need on the days that you require the most. I couldn’t wish for anything different or more in life than I already have and for that reason I thank everyone from the bottom of my heart who has made a positive impact through out of my life past and present.
I would like to end this speech on a high, to my fellow Moebius family. Life is a journey, there are no right or wrong paths, take each day at your own pace and you will get to wherever you want to be no matter how long it may take. Never change who you are, we are all perfectly imperfect in our own beautiful way.
Enjoy the rest of your day everyone and thank you for listening to my journey.