Jack's story

Even though all of theseJack was very poorly from birth with lots of different problems (breathing difficulties, poor feeding, vomiting after every feed, very slow growth etc). I spent the first month in hospital with him, followed by his first year full of milestone delays and hospital admissions. We were in love with Jack but it wasn’t a year we would ever want to repeat.

We received Jacks diagnoses at 18 months; however our geneticist spotted it from 6 months. Initially we were shocked and devastated followed by a period of denial. However there was an element of relief that eventually someone is listening to us, that we were no longer labelled as being neurotic parents, and that we now have a name to put to our child’s condition and a reason for all his difficulties.

Fast forward, Jack is now 7 years old and is loving life. He loves school, playing outside, playing on his scooter, beating me at MARIO cart, singing and dancing, only to name but a few. These are all things I could only dream about when he was 1.

I remember thinking, will he laugh, talk, crawl, walk and run etc? It has been a joy to watch him over the last 7 years reach these milestones, albeit very delayed. We are currently working on his toileting and are making some good progress. He does a very stubborn streak and can be very defiant. We are seeing more of this challenging side the older he gets.

His sisters, Alice and Esther, adore him but they still treat each other like typical siblings and love to wind each other up.

Although the future can be scary I have learnt to trust that Jack will surprise us in so many ways and continue to go from strength to strength in every area of his life.

We feel blessed and privileged to have him in our family and look forward to a life full of ups and downs from having a child/adult with RTS will bring.

Lauren Wyatt