My name is Juanita Whiley. I’m married to Steven and we have our miracle baby, Quilla. My brother also has special needs and lives in a home for the mentally disabled not far from us. My mom lives close by to us too. I help support my brother and mother as well.
When did you become a mom for the first time?
Last year 30 June 2018.
When did you find out your child’s diagnosis?
We knew at 16 weeks already and for definite after our 20 week scan and visit to the feral specialist Dr Borat at Umhlanga Hospital in Feb 2018.
What is the hardest part about being a mom of a child born with Down Syndrome?
Never being sure if I’m doing things the right way. Quilla also has feeding challenges and is mainly PEG fed. The constant struggle with incompetent and uncaring doctors has also been a reality. We battle daily with getting her to eat and drink more on her own.
What do you do just for you?
At this time, not enough. When I can I enjoy a pamper session getting a pedi or having coffee with a friend.
Favourite guilty pleasure?
Devouring an entire packet of ginger biscuits in one sitting with a cup of tea or coffee.
If you had to pick the soundtrack for your life what would it be?
Living on a prayer (Bon Jovi)
What is the kindest thing that someone has ever done for you?
Actually so many I could mention but what stands out…. a complete stranger, to this day, still sends us monetary gifts to help towards Quilla’s medical funds and our unforseen expenses. We are forever grateful and try to pay it forward in other ways as much as possible.
What does Down Syndrome Awareness Month mean to you?
The word awareness should be left out. It’s Down Syndrome month. A celebration of our beautiful rainbow children who make this world so much richer by being in it. Their joy and love and pure innocence makes for interesting conversations with complete strangers. Quilla has a smile that draws the grumpiest people out of their bad moods!
If you could change one thing in the world to make it an easier and better place for your child, what would it be?
More accessibility to schools and facilities to enable our children to be the best they can be. More understanding and compassion from the masses. Most of all, simply including them more in everyday activities and focusing on their strengths and not their weaknesses.