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.

  /  Post natal   /  Amelia


The day our beautiful daughter Amelia was born, our lives changed forever. We had tried to conceive for years, and after our second IVF cycle we welcomed our precious miracle into the world. She was loved unconditionally before she was born.


It was all a bit of a whirlwind really. Amelia was four days past her due date and I was not expecting to give birth to her via emergency C-section after the cord had wrapped itself around her neck and she had passed meconium inside me. Amid all the panic I still cannot describe the absolute elation, pride and relief I felt when I heard our baby cry for the first time and Amar shouted “It’s a girl!”. I was only able to cradle Amelia for a few minutes before I was told her temperature was low and the midwife took her away to put her under some heat lamps. The next time I saw Amelia she was in ICU in an incubator with countless tubes attached to her. Any initial worries I had were allayed when the nurses came and told me that Amelia just needed a bit of support with her breathing, but she was otherwise ok. Over the next couple of days several tests were undertaken and the doctors finally informed us that Amelia had Down Syndrome. We were shell shocked. I cried but didn’t know why I was crying, after all I had never come across anybody who had DS and knew absolutely nothing about it. We spent the next few weeks coming to terms with the diagnosis and what it could mean for our little princess’ future. We had so many questions and had no idea where to get answers

I practically lived in hospital with Amelia for the first four months of her life while she slowly weaned herself off the oxygen as well as having a minor heart operation and struggling with feeding. Amar and I found strength from each other and from the support of our family and friends throughout this time. Without a doubt those months were the hardest and most testing we have ever endured in our lives, but looking back, they undeniably changed us for the better. Amelia was a tough cookie. Despite everything she faced, she gave us glimpses of hope with her perfect gurgles and gorgeous smile. She inspired us to make a conscious decision to look forward and be positive. After being given lots of false hope that we would be able to leave the hospital with Amelia and go home, when the day finally came we couldn’t quite believe it! We were almost scared to leave and be without the support of the caring nurses that we had learnt to rely upon.

Within a week of leaving hospital we got in touch with our local DS Support Group. For us, meeting others who had been through similar experiences was invaluable. We saw the utter joy that these children brought to their parents and families and began to realise that Amelia’s future was for us to shape. We began to embrace all the things that made Amelia the adorable girl she is, including her DS, and we focussed on just enjoying having her home with us, taking her to groups and classes and watching her grow and develop.

When I look at Amelia I see the most perfect daughter I could ever have wished for. Yes, there are still things she may struggle with, and countless medical appointments, but I am so proud of how strong minded and courageous she is and every day she surprises me with something new she has learnt to do, small things to everyone else but huge things to us. We just want to make sure we give Amelia the best start in life, enabling her to fulfil her potential. With her strength and determination there is no stopping her!