I know I haven’t written to you in a while, I’m *cough* years old now so it does feel silly to put pen to paper after all these years but here goes.
You see I want things to be better for people with Down’s syndrome, not just in the UK, but all around the world. Over 20 years ago my father, Peter, set up a charity because, well frankly researchers weren’t taking his calls when he said he was ‘just a dad’ to my brother David. He and a handful of other parents decided research needed to become a priority for David and others with DS.
All those years later and we have come so far, but we need to go further. I am so aware that health issues in people with DS are used to scare new parents.
Santa you might wonder why does research matter, people with DS are perfect and wonderful people who deserve dignity and respect. You are 100% correct they are and do deserve all that and more, but unfortunately there are health issues that they have a higher chance of being diagnosed with and it’s likely linked to their extra chromosome.
And on top of this lots of people who are supposed to be checking and treating these issues just ignore them and call the struggles ‘normal for down’s syndrome’! Can you imagine them doing that to someone with any other condition?
What I really want this year is…
To reach more parents and doctors than ever before. To help them see why research is so vital and to support it however they can.
Help me find the words to awaken our community to fight for more.
To be able to fund ground breaking studies that we can use to demand better healthcare for David and everyone out there.
To improve basic access to healthcare and remove blocks like anxiety or fear.
I hope I’m not being too greedy Santa – you can keep the chocolate I asked for last week if so.
Heres a little pic of David and Mum this year-