Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Into Childhood   /  Harvey


Harvey is a healthy, determined, engaging little boy with a shining personality who lights up every room he enters. He loves going to school and playing with his brother and sister; and his favourite things are his toy drill and building with his magnetic bricks. He loves going down slides and playing in the garden, dancing, watching films, football and eating pizza and chocolate! Harvey has Down’s syndrome – something we knew nothing about until he was born. Since then we have spent the last 5 years learning from Harvey – he has taught us so much already about what is important in life – something that no text book or leaflet could have – he has taught us to look beyond labels! He walked earlier than expected, a week before his 2nd birthday and communicates using signalong as well as speaking a few words verbally. Our journey so far has been full of ups and (a few) downs but overall we have learnt to never underestimate him …

When Harvey was born the ITV soap opera Emmerdale began a storyline featuring a mother who was expecting and subsequently gave birth to a baby boy with Down’s syndrome. The character’s name was Leo and his mother was Rhona one of the village vets, his father was Marlon the chef at the soaps pub, The Woolpack. The part was played by a wonderful little boy Harry Whittaker. Through our contact with the Down’s Syndrome Association who were working with Emmerdale on the storyline to ensure they were able to produce the scenes in the most positive, realistic and sensitive way, Harvey’s details were passed to the casting team as they were looking for a second child to share the part with Harry. Three weeks later they contacted me and we arranged to take Harvey over to Leeds. And so, Harvey’s TV career began.

Harvey’s life is very busy! As well going to school and his filming commitments he attends his local school of Gymnastics which he loves! Harvey’s story is one of happiness and hope for the future and we hope more than anything that through this website it will be an encouragement and help to others.

Harvey was born in February 2011 – we had been told the pregnancy was low “risk” and unbeknown to us Harvey had Down’s syndrome – our world was rocked – it wasn’t what we had planned and dreamed of and within the delivery of one sentence we thought all our hopes and aspirations for our baby were shattered. We faced a future of unknowns. We were grieving for the baby we thought we wanted but mostly we were full of fear. We imagined a life of exclusion and “difference”. When I look back at those early days how I feel now is so very different from how I felt then! I remember worrying how to tell our friends – that some would back off from us for having a “different” child; that we may never go on another holiday – it felt like we would never laugh again. In actual fact we have had lots of lovely holidays since and friendships? Old ones are stronger than ever, all of whom have embraced our little boy with more love than we could ever have asked for. One close friend said to me in those dark early days, ‘Remember Alison, always focus on what he can and will do not what he can’t. I clung on to those words and have reminded myself of them from time to time when I’ve needed to! New friendships have been made through Harvey and as for laughing – he brings us so much joy! Day by day the hurt began to lift.

The day we were told Harvey had Down’s syndrome, how I wish I had known back then what I know now – that we could look and see ourselves today and see that our world hasn’t ended; back then I thought our lives were ruined but most certainly aren’t! In fact, although it’s a cliché, it was the start of the most amazing journey we could ever have imagined.
Harvey and our family are met with the most genuine interest and care from both people we know and complete strangers. I am constantly amazed by the warmth and kindness from those close to us but perhaps most touchingly so by strangers. We have always been taken back by how incredible people are that we have never met before. They take time to talk to Harvey and to us. And I know that this is not unique to us as other parents with children who have DS have the same experience.

Life is busy but so fulfilled. The people involved with Harvey every week are wonderfully supportive – from his teachers and staff at school to the gymnastics coaches who teach him. The Emmerdale team are so welcoming and warm and cast members and crew all take time to spend time with Harvey both on and off set! He loves playing with his on screen sister, April, played by Amelia Flanagan and makes himself at home in his dressing room and high fives all the crew and canteen staff – who always save him sausages for his breakfast!

We don’t want to sugar coat things though. Sometimes life is hard. We never thought we would be taking our child to speech, language and occupational therapies, attend meetings with Special Needs Officers, have physiotherapy and paediatric check-ups. Of course, we have bad days when Harvey is feeling stubborn or grumpy (yes, it is a myth that children with Down’s syndrome are always happy and loving!) and we sometimes fear for the future but overall our family life is happy and fun filled and has been enriched beyond measure with Harvey in it.
People with DS are being given the best chances in life and far from being a regret or disappointment Harvey is quite honestly the most wonderful little boy to have in our lives.

You can follow @helloharvey on Twitter for regular news on our story so far……