I am extremely proud to be running the London Marathon for the Down's Syndrome Association. They do so much amazing work but I am running, in particular, to raise money for their TELL IT RIGHT START IT RIGHT campaign - which aims to give expectant and new parents up-to-date, accurate information about Down's Syndrome.

The Government has just approved the new non-invasive prenatal test (NIPT) for Down's Syndrome and it will be rolled out by the NHS from 2018. But, as the DSA explains, the new test is "currently being marketed without the necessary regulation to ensure that each individual choosing to take the test is able to make a decision based upon accurate and balanced information delivered by appropriately trained health professionals."

It is a sad but all too true fact that while life for people with Down's Syndrome has improved dramatically over the last 20 years, many expectant and new parents are receiving out-of-date, inaccurate information about Down's Syndrome, often delivered in a way that causes huge distress.  Too many medical professionals still tell parents that they are "sorry" about their babies, and far too many do not have any real understanding of what Down's Syndrome means today. 

We chose not to find out for certain if George had Down's before he was born. But when he was born, the information we were given was quite unbelievably negative. I remember sitting in a hospital bed, with my newborn son a few floors below in Intensive Care, and the Nurse giving me a list of all the things that it was more likely would medically go wrong with our son. It was a long list. The messages we were given in those first few days about what his life would be like were so negative; so depressing. 

Now I wish I could go back and tell myself that everything would be just fine; just wonderful. I wish I could say that yes, there would be challenges and no, it wouldn't always be easy, but that George wouldn't go back for another hospital stay after that first week; that he would learn to walk, and talk, and read, and write; that he would be funny and kind and caring; and that he would enrich our lives in ways we couldn't even imagine. 

I can't do that, but I can help the DSA to make sure that other parents do not have the same experience. 

The new test will give parents real choice, and that is a fantastic thing. But I am worried, because it should and must be an informed choice.

The DSA urgently needs your support so that it can:

- Continue to send up-to-date information packs to Health professionals and centres up and down the UK;

- Immediately increase the number of TELL IT RIGHT START IT RIGHT study days for qualified health care practitioners at hospitals;

- Offer training to the wider range of practitioners who need to know accurate and balanced information about Down’s syndrome in order to be able to answer questions and support expectant parents through the screening process.
 

I am surrounded every day by difference - at home, and at work. And I love it. Difference teaches people to look at the world from a new perspective. Difference breeds tolerance, kindness and generosity. Difference is fun. 

Please make a difference and support me and the DSA. The London Marathon is the big one and I am running it for a BIG cause!!!