About Me

I am a young woman with Down’s Syndrome (DS) and I share my experiences and campaigns on my Facebook page: ‘Heidi Crowter – Living the Dream’. I advocate for better healthcare and independent living. 

I live with my husband James. We got married in July 2020 with a small wedding because of the pandemic but watched by thousands online!  I work at The Ups of Downs support group in their drama groups for children with DS. 

I have campaigned with ‘Don’t Screen Us Out’ since 2016 about non-invasive prenatal testing (NIPT). Currently abortions are allowed up to birth for severe disabilities in the UK. In 2021, I took the Government to court to get this “downright discrimination” removed from the law. I am the first person with DS to take a government to court. I  lost the case at the High Court and the Court of Appeal, but I never give up! I have now asked the Supreme Court for permission to appeal. Watch this space!

I have spoken outside Parliament and have campaigned tirelessly to show having this condition does not mean the end of your life. I have assisted the NHS and other professionals to provide accurate information when telling prospective and new parents about DS. 

I have also spoken at two World DS Congress about independent living and am the Patron of ‘The Ups of Downs’ support group.

James and I are also Patrons of Positive about Down Syndrome (PADS), a UK based charity supporting parents antenatally and postnatally.  In 2021 we joined a PADS family day and enjoyed cuddling babies and encouraging parents.

Most recently I have been a founding officer of the National Down Syndrome Policy Group who are working with the English Government to get a DS Bill through Parliament.  The bill passed its second stage on 26th November 2021 and it received overwhelming support from MP’s.  On Thursday 28th April 2022 it was given Royal Assent and became law!

You can read my blog here.