Lexi was born by emergency c-section after a routine appointment discovered she had a rapidly reduced heart rate. We were told how incredibly lucky we were to have been there at that time as it could have been a different ending. She was always a very unsettled baby, didn't like to be held or touched, she seemed to just cry for the 1st year of her life. We met many different Drs who could not find anything wrong with her. For a long time, we were told she had GDD.
Lexi struggled with a lot of everyday life, she didn't cope very well when starting in nursery. It gradually became clear that as long as her everyday routine was the same we managed fine, so our whole life then became a giant calendar with everything noted down in the order it would be happening.
When Lexi was almost 12 we finally recieved the call we had been waiting for. The DDD Study had found the answer to all of Lexi's difficulties! We were so excited to finally have some answers. Only when we met the geneticist we really didn't have answers, we just had a name.
Lexi shares her syndrome with only 87 other children IN THE WORLD. We are 1 of only 12 in the UK. So, instead of answers we got a "family" with whom we can share our successes & concerns. We can see how the older children are developing & offer encouragement & advice to the parents of younger children. There is very little information on how Lexi will be as an adult, no life expectancy can be given as we have no comparison. So we live very much for now! Every achievement, every new goal we reach is celebrated & shared with our new PACS1 family.
Lexi is now almost 14 & is very much still reliant on her routine boards. She is the happiest, grumpiest, smiliest teenager I know. She amazes us everyday with her resilience & attitude. Although she is still very much dependent on other people for help with personal care & danger awareness etc. she just smiles & carries on! She loves her baby sister Aubrie. She likes to go out walking in the nature reserves with our family. She LOVES school!
She really is my little superstar!!