We were taken aback by the nasal tube and the rather weak physique of Ishaani, a six year old charming princess. Her mom told us “Stay normal. Don’t show her any pity or sympathy, just say Hi and greet”. We took a moment to don the cheerful mask and greeted Ishaani, who was lying on a comfortable mattress. Ishaani wore a velvet hairband and was very well dressed. She slowly half-opened her eyelids and a glint passed through those eyes when she saw her mom. Meet this super-mom who also pursued her doctorate along with fulfilling her role as a faculty, homemaker, nurse, researcher and fighter, Dr. Poornima P Kundapur.
Early Instincts
My daughter, when she came into existence, was a bundle of joy. She was a bubbly child. She could crawl only after her first birthday. I instinctively felt that there was something wrong. I was told that I am worrying unnecessarily. She developed a squint in her eyes at one and half years. My eyes tear up when I recollect Ishaani undergoing strenuous physiotherapy suggested by the doctors, in order to help her walk at an age of one year and nine months. But it didn’t help. We made her undergo MRI at such a young age. Nothing could be diagnosed.
Internet Research
I was doing my research then and internet exposed me to a lot of info. I literally googled every symptom that Ishaani showed and I would try to understand. There was a period when I thought Ishaani was in Rett Syndrome spectrum, which affects only girls, because she showed some of the Rett-like symptoms. But it(Rett syndrome) was proven wrong in the blood test conducted.
Finally Undiagnosed
At 2 years, she started losing weight. MRI was re-conducted after 6 months, and the doctors found major changes when compared to previous reports. My daughter had symptoms of development delay (DD). Her’s is a very rare case where symptoms overlap, and it is said that 20% children who fall under the DD spectrum remain undiagnosed. Ishaani is one such case. Therefore, the generic name of her condition is called Degenerative Neuro-Regression, where nerve cells are regressing, meaning that she would gradually lose her skills to crawl, sit erect, lie down, move, and control her neck, one after the other!
I went to AIMS, Delhi with all her medical records. We met an expert in paediatric genetics, who arranged our meeting with some experts in neurology. Ishaani’s genetic testing was also carried out. We contacted some doctors in USA as well.
Midst You Finished Your PhD…
To be honest, time management and perseverance is what it takes! It’s all about the focus. If it means studying at 4 am after spending some time with my daughter, so be it! I juggled my time. I followed a schedule. Knowing what you want is most important. I had to finish thesis in four and half years, so I had to! Whatever the circumstances maybe. No excuses.
My Support System
Ishaani has a beautiful pair of eyes. She acknowledges us with it. We watch TV together, I tell her stories, we go for walks and visit the beach. I don’t know what future has in store for her. I sometimes think about the mothers who cannot afford parenting or managing their children like we do, or afford the quality of life that we are able to provide. Not everyone has the means to chase and research the symptoms like I did, giving Ishaani the space like we are doing. All this is because of us – my husband Girish, my son Ninad, my family, and my extended family.
Ideas: Ideals: India
People ask me- what’s wrong? I reply- “nothing’s wrong!” Ishaani is just less fortunate than us. She is my inspiration. She’s the fighter. Her way of looking at life has opened my eyes.
I had heard that serving people is noble, and that it gives you self satisfaction. I’ve come to realise how true it is! Empathy for a person should be a common attribute in every one of us, not the sympathy, since it drains energy from them.
I read that in America there are medical subsidies for children with special needs. Touchwood! My husband and I are earning enough to give Ishaani a good quality of life. You need to be financially well off to manage hospital & medicine bills these days. I wish that conditions improve for the specially abled people in India.
Advice to Parents
Parents need not be unnecessarily scared about their child’s development. Let them go through the joy of parenting. They’ll be observing the growth of their child on the back of their minds. And I’m sure that every mother has an instinct about what is happening with respect to her child!
Most Cherished Moment
First time and the only time Ishaani said “Amma”(after the regression started setting in). That one morning I cherish the most.
Your Biggest Lesson in Life
Ishaani has made me realize that the purpose of life is a life with a purpose . She has made me enjoy every bit of it, maybe in good times, or in not so good times!
Dr. Poornima P Kundapur, has redefined inspiration for us. KYS salutes every parent who sacrifice everything to shape their child’s future and help them succeed. Happy Parents Day.