Nisha Soni on writing about Down Syndrome and the Wouldn’t Change a Thing charity
PUBLISHED: 00:00 25 February 2020
Christopher Waud Photogrraphy
Nisha Soni of Bushey highlights the positives of Down syndrome in a collection of true stories entitled Wouldn’t Change a Thing.
Your son Kush was diagnosed with Down syndrome shortly after birth, can you describe your reaction?
It was quite an emotional roller coaster. We were scared, we didn't really know what it meant for us. I don't think you can truly ever know until you live it and breathe it. That's when you realise "what was I worrying about?" It's nothing to fear, your baby is just a baby, yes they may need some extra help and support, but all he or she needs is to be loved. They will go on to do everything they are meant to do, at their own pace and time.
You went viral on the internet, tell us about that.
I'm part of an online Down's support group. One of the mums suggested we make a carpool karaoke style video for World Down Syndrome Day - 50 mums|50 Kids|1 Extra Chromosome. Everyone recorded their parts and sent them to one of the dads who volunteered to edit it. We never in a million years expected it to go viral in the way that it did. A few of the parents went on to set up the Wouldn't Change a Thing charity.
The charity made a book with parents' stories, including yours, what's the aim?
I don't feel the information out there currently allows people to make a fully informed choice. Wouldn't Change a Thing presents lived experiences from families who have babies, children and adults with Down syndrome. With the best will in the world, most medical professionals that parents are interacting with don't really and truly know what it means to have a child with Down syndrome unless they have one.
There is so much more positive than negative. I wish I had this book to look at when Kush was born. It would have just given us the boost we needed to know that everything was exactly how it was meant to be, and we were going to be ok. There are no better people to speak to than families of people with Down syndrome, we will say it how it is warts and all!
What has Kush brought to your life and family?
He is our ray of sunshine, he will never fail to put a smile on the grumpiest of faces. He is warm, funny, kind, intelligent, resilient, and just never fails to surprise us. He rides, swims, does gymnastics, he's even a model. He has made me a better person and I look at the world in a different way now.
Don't get me wrong, it's not all a bed of roses, we have challenges, but I would go to the ends of the earth for any of my children to give them the opportunities they deserve. It's no different with Kush, I might just have to work that little bit harder.
The bottom line is, we wouldn't change Kush for the world, but we will try and change the world to make it a better place for him, and others like him.
For more on the book and charity, visit wouldntchangeathing.org