Alison Turner – South Regional Rep
Alison lives in London with her husband and their 3 boys.
Gibson, the middle child born in 2004 has PMS. Although he is non-verbal he makes plenty of noise along with his brothers. Gibson has a large deletion and also hydrocephalus. He began walking at 4 years old but needed support until he was 10 years old and now there is no stopping him.
He loves being outside, swimming, his giant tricycle and pop music.
Kat Pond – South Regional Rep
Kat lives with her family in East Sussex. She is mum to four children.
Bastian, her third child has PMS. He was born in 2008 and received the diagnosis when he was five. Bastian has severe learning difficulties as well as problems with his gross and fine motor skills. He has low muscle tone and uses a wheelchair when outside. Bastian is doubly incontinent and this presents a great challenge for the family. He is non-verbal but making great progress using a communication app on the iPad.
Bastian is a happy, cheeky boy who enjoys watching trains, building train tracks and giving high fives.
Victoria Feddersen – Midlands & Wales Regional Rep
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.
Penny Bradley – North Regional Rep
Penny lives in Bolton with her husband Giles.
Penny’s nephew (Charlie, born in 2008) has PMS and Penny has been energetically fundraising for the foundation since his diagnosis in 2010.
Charlie is mobile, sleeps well (though rises early!) and is continent in the day, but is non-verbal. He is generally very happy as long as routine is adhered to. He loves swimming, school, riding his 3-wheeler bike, waving at all kinds of transport and being with his favourite people, especially his very caring younger brother.
Nicola Connolly – Scotland Regional Rep
Nicola has lived in the greater Glasgow area since 1993, originally from Northern Ireland. She has 3 children with her husband Chris.
Her middle child Niamh, born in 2004 has PMS. Niamh was only diagnosed in 2016 but has had difficulties since birth and has always attended special schools.
Niamh is a generally very happy, sociable child with a sunny, mischievous disposition. She requires help with all daily tasks and generally keeps fairly well although she has had her share of hospital visits! Niamh loves dancing to pop music with disco lights.
Trudy McCrea – Northern Ireland & Ireland Regional Rep
Trudy lives in Northern Ireland in a little town called Omagh with her family of 3 girls and a very lucky hubby.
Katie, her middle child was born in 2010 and has PMS. Katie is non-verbal but has the most amazing personality and can make a lot of a noise when she does not get the attention she is looking for. Katie has difficulties with her sleep, diet and behavioural problems. Katie will not stay still and this keeps us as a family very active indeed. Katie enjoys being outside and loves the water.