Riley

My name is Abigail Ryan and i am 16 years old from Hampshire, England. I have an eight month old son called Riley James who was born on 29th June 2010 and has recently been diagnosed with moebius syndrome.


When i was 20 weeks pregnant they noticed he bilateral talipes and enlarged brain ventricles. I had many tests and scans and the doctors told me that he would be severely disabled and may not breathe, they suggested that a termination would be best. At 25 weeks pregnant by this point my love for Riley was too strong to part with and i decided that it was not my decision to take his life! I continued my pregnancy and had 14 scans and over 35 check ups in total and at each one the doctors would tell me another thing that riley might have or might not be able to do, the frustrating thing was that nobody knew anything!


On 29th June 2010 at 01:46am Riley James was born at term plus 8 days. He was not breathing due to birth and had to spend 7 days in special care where he was weaned off the ventilator and helped to breathe on his own.  Already showing he was a fighter! He was also born with webbed fingers on both hands which we were never told. He was given antibiotics and was allowed home on the 6th July. During his time in hospital he was unable to drink his milk straight away and when it came to giving him a bottle he was unable to seal his lips around the bottle although the sucking action was there, the doctors told us it was because he was on a ventilator so we were never worried. When he was 9 weeks old he still hadnt smiled or shown no signs in doing so and this is when i became weary of his facial muscles as he was showing no expression aswell as still being unable to drink. We mentioned this to midwifes, health visitor, doctors and our peadeatrician but nothing was being done. As i was concerned of Rileys sight at this point we were referedd to Great Ormond Street Hospital, a specialist childrens hospital, and it was there that they mentioned he could not move his eyes left to right, i had not yet realised this as i believed at this point he was completely blind. The results showed that he could see fine but not little things and the optician mentioned moebius syndrome, although this was never noted down and we thought nothing of it. We continued to have eye appointments and they kept mentioning moebius syndrome. One day i decided to research this on the internet and was shocked at th symptoms i found as they all explained Riley! I put down all the things due to what the doctors had said but doctors could never diagnose riley and i was pleased that i could finally ask the doctors to diagnose him. Now Riley is 8 months old and going to nursery 2 days a week, he has been diagnosed with moebius syndrome by our geneticist and has many people lookign after him from different hopsitals. he has crossed eyes and cannot smile or frown and has no expression, he can blink but not as much as others, he has weak upper body strength but can sit up very well after weeks of practicing, he cannot suck properly although his two teeth are making this easier for him nowadays! He chokes on small bits of food and has only just been put onto the stage 2 jars for babies. He is sensitive to loud noise and the sun although lights he is amazed by! He is being looked after by physio who have corrected his feet and now only wears boots and bars in the night time and surgery on his eyes and hands are being sorted out. He has recently had 3 fits which we were concerned by and are waiting on the MRI scans as they think his brain is putting pressure on the skull because it cannot develop. 


Riley James is one strong little soldier and makes me proud to be his mummy each and every day. I am faced with different challenges all the time and am currently still in school full time and predicted A’s in my GCSES exams still. I have got a place in college and hope to make Riley proud like he does me. I talk to lots of parents and people with moebius syndrome and find it helpful to talk to people and listen to their own stories. Although Riley cannot smile, he manages to light up the room even with his laugh!

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