Being diagnosed with a rare disease at birth can be difficult to come to terms with, especially when the treatment leaves permanent side effects. However, 25-year-old Shivangi has refused to let her experience with Meningocele shape her life, choosing to overcome her challenges through grit and determination.
Shivangi, a 25-year-old girl, resides in Meerut, Uttar Pradesh. Her life journey is inspiring as she has fought a rare disease called Meningocele since her birth. Meningocele affects about one in a million babies every year when they are in their mother’s wombs. The disease affects the spinal cord of the body and can cause serious maladies—paralysis in lower limbs and hips, lack of bowel and bladder function, fluid build-up in the brain, learning problems, attention span issues, and more. There is no solution to it other than surgery.
The surgery results of Meningocele are not great—only 50 % of patients survive. Out of them, only about 50 % are able to walk. Shivangi’s father, being a doctor, knew the potential of damage. Nevertheless, he went ahead with the decision to have her operated less than 24 hours after her birth to save her. The surgery was tough, as there were high chances of additional damage to the spinal column, causing instant paralysis.
This decision by Shivangi’s father saved her life. It also helped her be among the luckiest children afflicted by Meningocele. Her mobility and normal brain development were ensured due to the quick decision and the surgery’s success.
But there was just one glitch – the surgery could not reverse the bladder impairment caused by the disease.
Due to this, growing up brought many challenges for Shivangi. The lack of bladder control distanced her from her classmates. Parents of other children did not appreciate them being her friends. This continued for ten long years. Shivangi chose to keep all the suffering to herself. But slowly, it began to take its toll. Her academic performance began to decline. Worried about her declining performance, her parents decided to move her to her sister’s class, who was a year younger to her.
Her parents’ decision proved to be a great one. Moving to a lower class was immensely helpful as Shivangi got along very well with her sister. In her company at school, Shivangi began to blossom and stay happy. Additionally, their mother kept motivating her to study. She would always tell Shivangi that only education could change others’ approach towards her.
Though there were several hiccups in between, Shivangi never gave up. During college, she found a solution to her problem, thanks to developments in the personal hygiene industry. Her confidence got a much-needed boost and she kept herself occupied learning new hobbies. She was a good orator and loved anchoring, actively finding opportunities at college events and family functions. She was also skilled at cooking and singing.
All this gained her compliments for her self-confidence and go-getter attitude.
Professionally, Shivangi is now an entrepreneur, and a teacher. She is also a certified web-designer and possesses knowledge of software applications and languages. Recently Shivangi started her own company, an online portal for NRIs to connect with Indian culture. On the portal, NRIs can enroll for courses on regional languages like Hindi/Tamil/Bengali, classical dances from several parts of our country, drawing styles, and more. The portal has been gaining traction, and Shivangi has elaborate plans for its growth. She is also a teacher in a playschool, which gives her immense happiness.
Shivangi has come a long way from her childhood trauma, and now lives her life to the fullest. Her mother always encourages her by saying, “Life is too short to be filled with regrets.” She says, “Nothing can pull you down if you have the zeal to stand up after every fight. Even when your opponent is a lifelong, incurable disease.¨
Shivangi’s message to anybody suffering from serious medical conditions is, “Disability in any form is not the best of things to happen to us. But it can be made bearable if we learn to live with it, find our strengths, and focus on them. We ought to remember that struggle is an important and unavoidable part of life. Everyone, every single person, has to undergo some difficulties. So, we should not avoid our struggles but face them. Please utilise the power of education. A good education can influence anyone’s perception of you for the better.”
Shivangi also has a message to the society at large, “Please don’t undermine the talents of anyone specially-abled. If possible, make an extra attempt to understand them and their families. They have all the right and ability to live a happy and fun-filled life like you do.”
If you’ve been through a difficult time, or know someone who has, speak to Experts at YourDOST to get emotional help immediately.