EDI Spotlight
‘Well, it was obvious, wasn’t it?! ’ These words still resonate with me today.
On the 15 March 2020, my wife, Bec, and I were just about to leave the hospital with our second child. With car seat in hand, we were surrounded by doctors and nurses. They pulled the curtain around us, inspecting our baby girl. Then, they delivered the news ‘we suspect your baby has Down Syndrome.’ It was like someone pulled the rug from under us and in that short time, felt we underwent the stages of grieving. ‘No, you have the wrong child’ – denial, ‘why has it taken you so long to tell us?’ – anger and ‘please, are you sure? Can you check again?’ – bargaining.
If I could go back to that day again, I’d tell myself ‘It’ll be fine’. The reason why I reacted in the way I did was the lack of awareness around what Down Syndrome is – or to give it its scientific name, Trisomy 21.
Trisomy 21 (T21) was fully described by John Langdon Down in 1866. T21 is caused by a triplication of the 21 chromosome which results in global cognitive and physical disabilities and has no cure. However, this does not mean people with T21 have a poor quality of life.
While we were in hospital, we were advised to read about a charity called Positive About Down Syndrome (PADS). PADS share positive stories about people with T21 and the lives they live. For example, there is a dentist who lives in India, has fathered two children and himself has T21. There are many other positive stories and when you are part of, what I like to call, this exclusive club, you notice more people in society with T21:
• Ellie Goldstein – A model for Gucci and who has also appeared on the front page of ‘Vogue’ magazine.
• Todd Scanlon – A scaffolding influencer on LinkedIn.
• Sofia Jirau – A model for Victoria Secret.
• Tommy Jessop – Film and TV star (notably Line of Duty).
• James Martin – Star of Oscar winning ‘An Irish Goodbye’.
• Kathleen Humberstone – Has addressed the UN in Geneva and who has also starred in Line of Duty.
• Grace Strobel – A motivational speaker and skincare representative.
• George Webster – CBeebies presenter.
• Heidi Crowter – Disability rights activist.
People with Down Syndrome have a different learning profile to those that don’t – they take the scenic route and can take up to twice as long to learn to walk, talk and toilet – things we all take for granted.
The people above have paved the way for Polly, undergone the same/similar challenges she and others will face in life. They may have taken the scenic route, but they’ve got there and prove many perceptions as wrong. They prove that there is nothing ‘Down’ about it.