Down syndrome is not always inherited. When the condition is caused by trisomy 21, the chromosomal abnormality occurs as a random event during the formation of reproductive cells in a parent. Though researchers know that it is caused by an extra chromosome, no one knows for sure why it occurs. October is Down’s Syndrome awareness month and we share the parenting journey of Meghnaa Surana on raising a child with Down syndrome, empowering other parents, and creating awareness on it through her initiative Bubbles.
Unnathi was born on 10th Jan 2006. We were informed of her diagnosis at birth. I had never heard the term Down Syndrome before and so I didn’t know what to expect. The doctors and nurses at the hospital had sympathy and apology written all over their faces. It wasn’t how I had expected my daughter to be welcomed in this world.
I am blessed to be living in a joint family where every member only sees the ‘up’ side of life. In fact, my father-in-law named her Unnathi because he knew that she was here to grow.
In spite of all this support, I was still struggling to accept the diagnosis. When Unnathi was about 1.5 months old, I travelled to Chennai to my parents’ place. That’s where I heard of Rekha Aunty, Dr. Surekha Ramachandran to the world and Rekha Ma to our community. My first meeting with her at Mathru Mandir changed my life. Rekha Aunty showed me a world of possibilities. I don’t have the words to describe how she transformed my life but I’ll sum it up with this – she told me, “Your daughter will do whatever you believe she can. It’s all about your belief and your efforts.” To date, her words guide me.
Then began a slew of interventions – physiotherapy, sensory integration, speech therapy, yoga, chanting, special education. I was fortunate to connect to some great therapists and I had decided to give it my all. With an awesome family and some amazing friends backing me, Unna started blossoming. Not to forget, her role model, her brother Mudit. Mudit was barely 3 when she was born but he took his Big Brother role quite seriously. He’s her best friend, her teacher, her guide, and her critic. He is the biggest influence in her life.
Fountainhead School, Surat has been our greatest blessing. A school that’s truly inclusive – Unnathi is currently studying in grade 9. The school has molded her, empowered her and most importantly, given her some beautiful friends. She has been for every school trip, she has anchored shows during school events, she has participated in fairs and exhibitions, she also gets opportunities to help around in the community. The management and her teachers are very co-operative and her peers are regularly sensitized.
Unnathi is learning pottery and Kuchipudi. She plays table tennis, loves to dance, and has her own Youtube channel. She loves being on the stage and was invited to speak at the United Nations on the occasion of World Down Syndrome day. Unfortunately, the event was cancelled due to the pandemic.
My experiences with Unnathi led to the formation of Bubbles. Bubbles is an initiative founded by Aanchal (my sister-in-law), Mudit, and me to create empowerment and awareness for the Down Syndrome community. At Bubbles, we organize various sessions by specialists for our children. When we had started off, our volunteers for all our sessions were young teens and I strongly feel that that is a very important step towards inclusion. After the pandemic, our sessions have gone online and we’re now reaching out to families outside Surat. We’ve also collaborated with the Friendship Circle, through which typical teens and our special teens interact every Sunday. October, being the Down Syndrome awareness month, we’re sharing a series of videos to dispel the myths about Down Syndrome on our social media handles.
All in all, it’s been a challenging yet quite a rewarding journey. Unnathi is an embodiment of unconditional love and her positivity is absolutely contagious. Her resilience, her grit, and her charm are exemplary. She is the sunshine in my world!
As told to the author