Kristy is one of 200 people in the country born with a rare form of facial palsy called Moebius syndrome.
My name is Kristy and I am 19 years old, I have a very rare neurological disorder called Moebius syndrome. As soon as I was born doctors realised that there was an abnormal issue, which they were unable to identify. Crying would look almost mask-like and feeding was very limited. Luckily through my mother’s determination and perseverance she was able to find a way by pushing my cheeks together so I was able to feed from a bottle, so I would not have to have the support from a feeding tube being installed.
During the course of the early stages of my life my parents experienced the unknown, and the unexpected, due to the fact they had no knowledge of the condition from doctors or any understanding of what my diagnosis could be.
When I was just a few months old, my parents took me for an ophthalmology assessment at the North London hospital where I was born. By chance there were consultants from a Rare Condition Clinic based at a different London hospital making their annual visit to my hospital and I was spotted by one of the team members while waiting for my appointment in the waiting room. A South African consultant from this clinic gave my parents my diagnosis as Moebius syndrome in a conference room with other consultants present. We were very lucky. Other people do not always get the diagnosis until they are older or even during adulthood. I count myself extremely fortunate to have been in the right place at the right time. It had been a chance meeting.
As my parents had no idea what the condition Moebius syndrome was or how it was going to affect my life, they immediately asked the South African consultant 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. A few months later I went over to the specialist clinic where the South African consultant was based, for further assessments, for clarification of the condition and an MRI scan. At a later date they assessed my sensory development. As feeding was a struggle very early on in my life, I had six months on reflux powdered medicine in my formula milk so the nutrients could assist my growth and development.
My life revolved around giving up my time to attend hospitals in London regularly, especially during school hours which was sometimes challenging as I would have to keep on catching up with everyone else. I wore hearing aids at a young age and was visited at primary school by hearing specialists to monitor my hearing during the school day. At the age of two years old I had a grommet operation which unfortunately failed. It was later on re-attempted when I was seven years old at a different hospital, to help me to 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 my facial paralysis.
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 if I wanted to go through with this when I am older. He suggested visiting a clinic in the North of England for electrical stimulation on the facial nerves.
I attended many hospitals to check my eyes and I have had to use eye drop medication daily from a young age to keep the eyes moist because of the inability to blink or close my eyes fully. I would also go and see a specialist craniofacial dentist who does work with patients who have complex dentistry needs.
Moebius syndrome affects children in different ways other than just a facial paralysis, therefore I am extremely lucky to have the condition mildly. I have been given so much support and guidance through the years of my life, whether that has been family, friends, teachers, doctors and co-workers, and I would not be where I am today if I did not have their continuous support every step of the way. Even though my life has always revolved around my condition I never let it get in the way of what I would like to achieve and my ambition in life. I have embraced my condition and learnt to cope and deal with situations with a mature and positive approach whether that has been comments being made in the past, or prejudice and pre-judgment. I look at it this way, never judge a book by its cover, just because there is a slight difference doesn’t mean a person is not as capable as you to succeed in life. Value that with whoever you meet or come across, as you never know what that person has experienced in their own life.
I have now been working in a private nursery for a couple of years and hope to be able to progress further in the future and work with disadvantaged and special needs children which has always been a passion of mine. The children I work with don’t notice anything.
Throughout my childhood I have been in many dance productions and even a local pantomime which has given me a massive boost in confidence and has kept my head held high! Not only dancing, I have also been in many other clubs growing up such as Karate, swimming, Rainbows, Brownies and Guides and have gone on to become a young leader to a local Rainbows unit for a couple of years to gain experience in working with children, which I am now currently doing as a full-time career. Each and every one of these clubs throughout of my childhood has given me the positive push and confidence with social interaction with other children and adults. My family have always been a massive support throughout my life and would push me to go for situations I might feel nervous about as they knew once I have pushed myself into doing whatever it may be, a good outcome will come out of it and I would be confident in going out and doing other things. My family would never wrap me up in cotton wool especially my parents.
From a young age I wasn’t told that I had Moebius syndrome as they believed that I should be brought up like any other child and should not let this define me as a person. I went on to find out my condition when I was older but always knew that I wasn’t exactly like the other children.
I accept why my family chose to do this while I was growing up as without a doubt I was treated like everyone else, and I understand I was their first-born child and they had no experience in parenting. It would have been hard enough for them, especially not knowing what my future may hold, they just wanted to let me have a fulfilling childhood without any worries!
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 28-02-2019 || Next review due: 28-02-2022