Biography
Riley was born in 2010 5 days past his due date and had no complications. Riley was discharged within 8 hours of being born and went home to join his big brother Tyler. We first noticed Riley was falling behind with his development when he was around 11 months. Riley wasn’t great at sitting up unaided, had no interest in walking and very little verbal communication skills.
When Riley’s older brother Tyler was diagnosed with MECP2 duplication syndrome myself and their dad were tested to see if we were carriers and it confirmed that unfortunately I was so we always knew there was a chance that Riley would also have the genetic duplication. When Riley started showing signs of some of the difficulties that Tyler had shown he had blood tests and it confirmed that he also had MECP2 duplication syndrome. There is only 19 months between Tyler & Riley and Riley was already born when we got Tyler’s diagnosis. Riley really struggled with his walking, he had no interest in it, and although he would crawl about everywhere he didn’t walk independently until he was just over 3 years old. Riley still is not the best on his feet, he is very unsteady, has no sense of danger and is at high risk of injury due to his epilepsy. Riley has used a wheelchair predominantly since he was 3 years old. Riley has global developmental delay, is non-verbal, acid reflux, low muscle tone, high risk of aspiration and needs full 1:1 support which will be needed life long.
MECP2 is a degenerative condition which means Riley will face many more obstacles on his life. Riley was diagnosed with drug resistant epilepsy back in 2022 and is on 3 lots of high dosage epilepsy medications and still has daily seizures. Riley had a gastronomy PEG inserted in January due to his high risk of aspirating which has resulted in numerous chest infections especially over the past couple of years. Riley has responded well to his PEG being inserted although it is a lot of change which in itself can be challenging. Riley does not cope well with changes whether that is with his routine or medically. Even with all of Riley’s medical complexities he always gets on with his day with a smile on his face and a whole lot of shouting and craziness. Riley may not communicate verbally but that does not mean he’s quiet, he loves to be heard and make himself known.
|
