©2018 by Acrodysostosis Support and Research  

"Finding our group was a real blessing"


Riley is always happy this is him today

Riley was born on the 7th February 2013 by emergency caesarean section at Nottingham City Hospital 6 weeks early. The caesarean was performed due to Riley not moving and being small. Riley weighed 3lb 8oz, he was put into an incubator and transferred to the NICU where he spent the first 10 weeks of his life. While in the hospital the doctors decided to call in a geneticist because they were worried about his facial features and his hands and feet were very small. The geneticist decided to do some tests which took a long time. In the meantime Riley was allowed home on Oxygen due to his lungs not performing as they should, he was on this for just over a year with regular visits made by a nurse from the children's clinic who continued to monitor him.

We eventually got the diagnosis of Acrodysostosis and there our journey began. Being told your child has a genetic condition that is very rare really knocks you back and because there isn't a lot of information out there you feel like you are all alone. AcroD affects each child differently, they all seem to have some common traits, red hair, blue eyes, small hands and feet and a flat nasal bridge. Riley has also got severe learning difficulties, no speech yet, he only learnt to walk at the age of 4, he is still very unsteady on his feet and needs constant supervision. Riley took a long time to eat normal food and was in pureed food for a long time he is only now starting to feed himself.

Riley is in mainstream school, which he absolutely adores, he has his own teacher who is brilliant with him and he loves being with all the other children. He is trying really hard to learn sign language, although Riley is now 5 years old his mental abilities are only at the level of a much younger child.

Finding our group was a real blessing we didn't feel alone anymore there were other parents to talk to and share stories with we have become one big happy family always there for each other even though we are miles apart.

Having a child with AcroD, or any other condition, is a challenge but waking up to Riley’s smiling face each day and seeing him happy makes up for everything else. Riley is our special child and we wouldn't have him any other way. We don't know what the future holds for Riley but I do know that he will always be loved and surrounded by people who love him and will always be there for him helping him on his journey.


Riley in NICU

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