Annie is a very happy, cheeky 10 year old who loves getting into mischief and doesn’t let any of her difficulties stop her from doing the things she wants to do. Annie has a sister who is 20 years older, a brother-in-law and a 3 year old nephew, she loves all of them dearly.

We first started to notice Annie was a slow developer when she still couldn’t sit up unaided at almost 11 months old and could not crawl on all fours but I didn’t really take too much notice because she was happy and healthy.

My daughter Emel has Phelan McDermid Syndrome and is already 16 yrs old! It’s hard to remember back 16 years, but what stuck in my mind was Emel had no desire to communicate in any way and this made me very sad.

I always felt bad that Emel might want a drink, a toy and I wouldn’t know, so I had everything accessible for her till I was told you are not giving her a reason to communicate, she has all she needs.

My daughter, Elizabeth, is almost 35 years old. She has many of the Phelan-McDermid (PMS) features, she is non-verbal and has a limited range of movements. She can walk only (no other vertical movements such as running climbing etc). and she can stand up from a seated position.

She is the youngest of 3, and lives at home with us (her siblings have left home). We live in a village, in a rural community. During the week she attends a Community Day Centre in a nearby town.

We are lucky enough to live close to the River Stour so often walk it with our dog Scamp a very little yorkie. During heavy rain it floods over onto the footpath and occasionally it is so bad in places the footpath almost becomes part of the river, so I have always stressed to Harry the dangers of getting too close to the riverbank or running off.

On December the 30th 2017 Harry, Scamp and myself had been to visit my mum stopping at the supermarket on route so I had shopping in my shoulder bag, it was a bitterly cold day but was bright and sunny and had stopped raining, we were both wrapped up in lots of layers.

Bastian was born in 2008 and is the third of four children. His siblings are ‘typical’. Bastian was a happy baby who appeared to be in good health. We first noticed that something was wrong when he was about three months old. He was floppy and wouldn’t bear weight on his legs.

Everyone just believed he was a late developer because he was lazy. We really had to push for help and so began our journey of hospital visits, blood tests, MRI scans, appointments, assessments, therapies and so on from about six months old.

Annabelle is a happy and friendly 14 year old girl. She started secondary specialist school in Sept 2018 and settled in well. A few tears on her first day of school, but other than that she is having a fun time learning life skills and building on her strength.

Annabelle was able to tell me that she was scared, she uses words and if she doesn’t know how to describe her feeling she would try and use gestures. Annabelle has problems with certain letters and pronunciations, but it doesn’t stop her from being very talkative. She went to a mainstream primary school that benefited her social skills and I believe challenged her to improve her communication.

Daniel left Pennine Campus College in July 2017 and shortly after he finished there, he started at a community centre called ‘The Bridge’ which is run by his support worker, who recommended Daniel should start attending there. Shortly after he started the club they received funding to set up a local cafe.

So, in October 2017 the cafe opened, and Daniel started working there with his support worker and a couple of his friends with similar needs to Daniel. His job is to clear the tables and alongside his girlfriend Stacey he serves light snacks to customers. Daniel has developed a good relationship with the regular customers, and he is always polite and happy while he’s working.