Lynda lives in the Black Country, not far from her daughter Tanith and PMS grandson Harrison who live in Birmingham.

Both Lynda and Harrison can often be seen on road bridges over the motorway watching speeding traffic. A favourite activity for Harrison!

E-mail: lyndawhite@pmsf.org.uk

Sylvia Millership lives in Stourbridge, West Midlands with her husband Trevor and they have been married 49 years.

They have 3 children - two sons and their daughter Gemma who is mum to Noah and Jacob. Noah was diagnosed with PMS in 2016. He is a very happy child and at present mostly healthy, he is cognitively delayed, mostly non-verbal but very vocal.

Sylvia is our multi-regional rep and supports our team of reps wherever needed.

E-mail: sylviamillership@pmsf.org.uk

Rosie lives in Northern Ireland in a small coastal town called Portstewart. Her family comprises of husband Nigel, Lucas born in 2006 who has PMS, Keyva was born in 2009 and Caden born in 2013. Lucas was diagnosed in 2009 and has a very small deletion. Despite this he has learning disabilities, autism, OCD and ADHD. He is a very happy and gentle boy who is non-verbal although makes many happy noises.

Lucas uses an iPad to communicate and has over 400 words. He knows his animals, transport, colours, shapes etc and can ask for help with any personal needs. He is extremely mobile and very fast and loves any physical activity including swimming.

E-mail: rosiebovaird@pmsf.org.uk

Victoria lives near Retford with her 2 daughters.

Emily, her youngest daughter who is 8, has Phelan-McDermid Syndrome. Emily has mosaicism of the deletion and has a large deletion size. The syndrome affects Emily’s everyday life but she has overcome so many obstacles and achieved so much.

Victoria is so proud of her, she is such a joy to be around and every moment spent with her is to be treasured.

E-mail: victoriafeddersen@pmsf.org.uk

Katie lives in Berkshire with her husband Tom and two daughters Bella and Sophia.

Her eldest, Bella, has Phelan-McDermid Syndrome. Born in 2011, Bella was diagnosed when she was 5. She has a small deletion, leading to learning difficulties and speech delay, although extremely sociable and chatty now! Bella is an absolute fashion queen and also loves swimming and gym classes with her family.

Having studied Neuroscience at King’s College, Katie is interested in all the latest research into PMS and child development.

E-mail: katiegreed@pmsf.org.uk

Peter lives in Surrey with his wife Amy and three children. His youngest child Gracie who is 7 has PMS which was diagnosed when she was nearly 3.

Gracie is non-verbal but she communicates in her own way. She is loving, sociable and loves to have fun with her family.

E-mail: petergreene@pmsf.org.uk

Becky lives in Suffolk. She has two children, Ezra who is 8 and Sofia who is nearly 2.

Sofia was diagnosed with PMS as well as another rare chromosomal condition when she was 3 months old following the discovery at 4 weeks old that she had complex congenital heart disease that would require open heart surgery.

Since then she has had a cascade of evolving medical issues, including severe feeding and gastrointestinal difficulties, sight issues and brain abnormalities which will cause her life long mobility, speech and cognition problems.

Sofia is a little warrior who displays such tenacity and courage despite her medical conditions.

E-mail: beckyjames@pmsf.org.uk

Joe lives in Nuneaton, Warwickshire with his wife Elissa and son Ivan and chihuahua Bertie.

Ivan was diagnosed with Phelan-McDermid Syndrome just after his 2nd birthday in December 2021.

Ivan has hypotonia, dysphagia, hydrocephalus, hip dysplasia and severe gastrointestinal problems. He has suffered several regressions which has affected his development. Ivan lost his ability to babble and use words and is now non-verbal. He is able to walk short distances with support.

Ivan loves being outside, playing with his cousins and taking pony lessons, which help with his core stability and swings. He has a very cheeky personality with a smile to match!

E-mail: joenovak@pmsf.org.uk

Tanith lives in Birmingham with her husband Darren and son Harrison.

Harrison was diagnosed just before his 1st birthday back in 2013, being one of the youngest children to be diagnosed with Phelan-McDermid Syndrome.

Harrison is mobile, though still a little unsteady, has hypertonia and is double incontinent. He is also non-verbal though this doesn’t stop him communicating; he points, taps and will take you to what he wants. He has a wicked sense of humour, is always happy and has a smile that will light up a room!

E-mail: tanithsherwood@pmsf.org.uk