Phoebe’s Story

Phoebe was born on 15th October 2000, after a happy, healthy pregnancy. She is our 2nd daughter and her older sister, Chloe, is 3 years older.
Life went on, life was hectic but fun with 2 lovely girls and a busy admin job.

When Phoebe was around 6 months old her nursery teacher questioned her development and after a family holiday it was obvious to us that Phoebe was not developing the same as her sister had. Our Health Visitor agreed and we were then referred to our Paediatrician.

That’s when our journey on the Special Needs bus began! We quickly had a lovely team around us and a massive amount of support from friends and family (12 years on, that is still the case).

It was quickly decided that Phoebe was likely to have a chromosome abnormality because of some of her facial features, but it wasn’t until 2008 that our genetic consultant came round to tell us that Phoebe has Pitt Hopkins Syndrome.

In reality, having a diagnosis is great but Phoebe will always be Phoebe and we love her just as she is. To date she attends a fantastic Special Secondary School where she is working hard. She was previously at a lovely Special Primary School that were able to offer Conductive Education which was great for us to focus on to get Phoebe as mobile as she can be. She is not able to walk independently but can stand and step with support at her trunk – when she feels like it! That’s very much Phoebe’s thing and what she has taught us, it’s all on her terms. She is working hard with new communication methods but we know when she’s happy and when she’s sad. I read a fridge magnet in a shop that said “If you can talk you can sing and if you can walk you can dance”. Sorry – NOT TRUE! Phoebe spends her life dancing and singing in Phoebe’s way and it is an absolute privilege to experience life singing and dancing with her every single day.

~Sarah, Andrew, Chloe and Phoebe, Northamptonshire, UK