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A Parent’s Journey With Down Syndrome

Written By: Tasneem Akbari Kutubuddin
October 6, 2020
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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.

Meghnaa with Unnathi

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.

Children enjoying a session at Bubbles

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.

Down Syndrome is a disorder, not a disease.

Down syndrome is not a disease, disorder, defect or medical condition and therefore does not require treatment, prevention or a cure. It is a naturally occurring condition, which impacts the arrangement in a person’s chromosomes.#downsyndrome #downsyndromeawareness # #theluckyfew #sindromededown #downsyndromelove #inclusion #specialneeds #nothingdownaboutit #love #trisomy #downsyndromerocks #morealikethandifferent #trisomia #downrightperfect #upsyndrome

Posted by Bubbles on Thursday, October 1, 2020
Unnathi and her Brother Mudit busting some myths on Down Syndrome

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

Childrendown syndromedown syndrome monthinfanooctober awarenessParentingreal story

Tasneem Akbari Kutubuddin

Tasneem Akbari Kutubuddin has done her masters in Journalism & Communication and has worked as a senior journalist, editor and columnist for leading publications like The Logical Indian, Deccan Chronicle, Worldwide Media Corporation, The Bridge and Provoke.
With Infano, she hopes to create more awareness about women’s health issues. Suffering with Fibromyalgia, a chronic pain condition, she has also been advocating for its awareness through media.

1 thought on “A Parent’s Journey With Down Syndrome”

  1. Kavita thawani
    October 6, 2020 at 10:02 pm

    A beautiful journey. A journey becomes remarkable not because of the ease with which it’s taken, but because of the stumbling blocks crossed over to carry on. More power to Bubbles, Unnati, Mudit the bro, and the proud and resilient parents. Meghna, bless you to be a guiding light for other parents and the Unnatis in their lives. 🙏

    Reply

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Infano Care

The role of Mothers breast milk in child growth

Written By: Infano
April 27, 2020 | 05:01 AM |
1,327
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Mother’s milk is necessary for a child during the first six months of its growth, as best nutrition for a newborn baby is Breast milk. We all know that mothers always wish best for their baby especially regarding nutrition and health. 

According to tiny step, Breast milk contains a significant amount of nutrients required for necessary growth and development.

Why is breastfeeding important 

When the child starts to mature gradually, they begin to acquire the ability to digest food and fight infections including development in a child ‘s brain because neural connections form more rapidly during its first three years of life. 

To support these functions, breastfeeding is mandatory because it contains nutrients like partially hydrolyzed proteins which helps in assisting these functions. As per World Health Organization Assistant director for Family, Women ’s and children health, Flavia Bustreo breastfeeding sustains lifelong advantages for the baby especially during their childhood and adolescence. 

Benefits of Breastfeeding in a child 

Reportedly, the PHPs comprises proteins that can be partially divided into smaller units, making them more accessible for a baby ‘s immature digestive system. The Lancet studies reveal that enhancive breastfeeding leads to higher IQ scores and school attainment. 

The PHPs in breast milk has several benefits including Improved gut health, where the PHP induces the growth of healthy bacteria that boosts baby’s Immunity, helps in reducing the risk of allergies like dermatitis, eczema and rhinitis. 

Moreover, breastfeeding also has the ability to prevent obesity leading to the growth of a healthy baby. Unfortunately, the importance of breastfeeding remains ignored in many parts of the world.

breastfeedingbreastmilkchild growthmother

Infano

Infano is a platform that aims to impact every facet of a woman's life - health, career, motherhood, lifestyle, and much more. We are a team of like-minded individuals who wish to be a support to women from all walks of life and in everything they do. Our aim, through our posts and articles, is to bring to light the issues and problems that women face in their day-to-day life, to try and make their life a little easier and a little better, provide the latest news updates of women around the world, and to highlight their big and small achievements. We celebrate womanhood each and every day.

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