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.

  /  Ante natal   /  Kara


My name is Sara and I am the mum of two wonderful little girls – well they are not so little anymore. They both adore ballet, they love swimming and they both want the same toy even if they have not played with it for six months. My eldest daughter is nearly 7 and a huge fan of my little pony and ever after high. My youngest really has a fixation on Topsy and Tim and anything her older sister does is of course wonderful. We are a typical busy family juggling work (I’m a college lecturer), school, preschool and clubs. The only unique factor about us is that Kara has Down syndrome.

Our journey started out about over 4 years ago when we found out prenatally that Kara has Down syndrome. We had a positive diagnosis to the antenatal test. My whole world fell apart and we were given the difficult decision at the time whether or not to keep Kara. Now this sounds such a cold and awful thing to write but at the time we genuinely did not know how wonderful and normal our lives would be. We were given fantastic support from the foetal medicine team and I did so much research. We reached out to anyone who had a child with Downs syndrome. I listened to a podcast on radio four by Seb’s Mum and that helped me. We made contact with Downside up. I read papers by Sue Buckley. I read and listened and learned. I understood things would take longer but they would not be impossible.

We were told Kara would need open heart surgery but once she was born the hole healed. She is a very happy health child. At three she is now fully potty trained and now speaking – single sometimes two words but she can sign very well in fact I am going to have to watch more Mr Tumble or Singing Hands to keep up. Kara is at a mainstream nursery and going to a mainstream school.
Some things have to be done in stages and yes there are times when going to the hospital or trying to get funding can be tough, but Kara is not hard work. She is great fun and I just see her as my daughter. We pull and get along as any family. Kara is achieving more than I could ever have imagined and I am a very proud mum of a very happy little girl.