The following is taken from the Un-Masking Moebius Conference. Emma has kindly allowed us to reproduce it for those who did not have the opportunity to hear it in person.
Hello, I’m Emma Gratton. I am 20 years old. Please bear with me as this is a big thing for me, to stand up here and talk to you all of my experience of Moebius.
I have prepared a few words as I do not want to leave out any important details of the story so far.
I currently live in Taunton, Somerset, born in Bristol where I was diagnosed at the age of 2 ½ years old.
Mum and Dad struggled to understand what was wrong in the early years, knowing something was wrong, but not knowing what. Until a visit to an Eye Specialist who’d seen one case of Moebius Syndrome 20 years before me. She referred me to her boss at the local hospital, where my diagnosis was confirmed.
After all of that came my education.
Pre School Days:
· Educational Psychologists, Speech Therapists and Health Visitors, who’d not heard of this rare condition, said they suspected I would have learning difficulties, said I mat not attend a mainstream school, they suggested holding me back a year, advised Mum and Dad to do that. Mum and Dad said NO to this suggestion. Then the IEP (Individual Educations Plans) began.
Primary School Days:
· Started with chasing targets after a difficult start, ended with meeting targets in year 6. I was starting to hold my own compared to my peers.
Secondary School Days:
· Not only caught up to, but overtook many of my peers in terms of performance. I aspired to achieve in all areas, Mum and Dad said do your best, and that’s good enough for us!
Further Education (College/A Levels):
· I studied subjects that interested me, sociology, general studies, geography, health and social care. I was chosen to take part in EPQ (Extended Project Qualification), this was a must for me as I wanted to go to UNI.
Higher Education (Degree):
· Less than 24 hours ago I graduated from my course, Foundation Degree in Health and Social Care Studies and I’ve just begun my BSc Honours Degree in Health and Social Care Management.
So, considering the start, and the lack of support and optimism from some of those in the healthcare profession, I think
· My 10 GCSE’s (2 A Stars)
· 3 A Levels
· 1 AS Level
· A Green Belt in Kick Boxing
· A place in the British Disability Gymnastics Team
· Ride a bike
· Passing my driving test at the very first attempt with only one minor fault
· Self Employed NYR Consultant – Running my own business
Is a pretty good starting point for the rest of my adult life!
Finally, if I did not have Moebius Syndrome:
· I would not knock as many things over
· I would not have had as many bruises
· I would not need a High Vis sat nav
· I would still have been bullied at school, because everybody is J
· I would not have had some of the most amazing experiences, and the most supportive and caring family and friends anyone could wish to have.
THANK YOU for taking the time to listen to my story.
If you have any questions please contact us.