Annie's Diagnosis
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...
Family stories
Families share what life with Phelan-McDermid Syndrome is like: the challenges, and what has helped. By sharing, we build a better future for our community.
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Emel's Communication
My daughter Emel has Phelan-McDermid Syndrome and is already 16 years 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...
Elizabeth's Social Activity
My daughter, Elizabeth, is almost 35 years old. She has many of the Phelan-McDermid Syndrome (PMS) features, she is non-verbal and has a limited range of movements. She can walk only (no other vertical movements such as...
Harry's River Adventure
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...
Bastian's Sleep
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...
Annabelle's Speech
Annabelle is a happy and friendly 14 year old girl. She started secondary specialist school in September 2018 and settled in well. A few tears on her first day of school, but other than that she is having a fun time...
Daniel's Work Placement
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...
Would you like to share your story?
We would love to hear from you. Email info@pmsf.org.uk.