Lakshmi Kaul is one of the rising stars of British-Indian politics, a community organiser, a campaigner, a political aide. She is also a mother mourning the death of her nine-year-old daughter Nainika Tikoo who had an allergy attack all of a sudden and passed away within a few days. Kaul has used her sorrow to start building the Nainika Tikoo Memorial Foundation for Allergy Care and Brain Research. She talks to Grin about finding indomitable courage amidst the most resounding of sorrows.
1. Please explain in detail why focusing on allergy treatment is such a critical but often ignored part of medicine.
The problem isn’t so much with the treatment for allergies but in the diagnosis of them. The only way to ascertain whether or not someone has an allergy is exposure to the allergens. I draw parallels to the time when vaccination became mandatory for babies — what caused this to happen? We now accept vaccinations as part of a child’s growing up needs and do not question its very requirement. Similarly, in countries like the UK, the cases of allergy sufferers is on the rise — one in three children are diagnosed with some allergy or the other and suffer from either asthma or eczema as a byproduct of their allergy or sensitivity.
The knowledge that allergy can be fatal or the awareness of anaphylactic shocks is rather poor. There is the added frustration of administrative obstacles in the way of ensuring progressive care for allergy sufferers, especially children. Specialists and primary health care operate as two islands, hardly interacting or working together.
2. Tell us about Nainika, the wonderful little girl who this foundation is dedicated to.
Nainika Tikoo was a vibrant, energetic young girl who defied her health conditions to harbour an aspiration to be a gymnast, dancer and actor. With her asthma and allergies, her body was weaker than other children and she was prone to falling ill more than the others with the changing weather and temperatures. She was well aware of allergies and was able to manage it herself — checking ingredients before eating anything, in case of an asthma attack, administering the inhaler and in a more difficult situation, seeking help. She was all we had!
3. Talk to us about what you have experienced in the last few days and how it has transformed you and your outlook to life.
At the hospital while Nainika was on ventilator in the ICU, I learnt a lot about the truth of life and death. On every single bed there lay a child or a baby who was struggling — strung by just a heart beat. We were more than aware of every breath, every heart beat — almost like you do in meditation. I must admit, I have never meditated in my life, am elusive in my sitting through hawans or pujas yet I felt as though suddenly wisdom dawned upon me — almost what Buddha may have felt under the Bodhi tree? Besides Nainika, there were so many other children there whose families became so close to me — we were all hoping and praying for a miracle for each other. Only one little girl, Lilian got better and went home — I had promised her Mum that before Nainika left the hospital, Lilian would speak to her Mum (Fadhila). A night before we switched off the ventilator, Lilian spoke to her Mum and requested to be shown a cartoon show. Even though the next day, I were to make the most difficult decision of my life — to take the life support off of Nainika, I sensed joy! I was calm, content — as though Nainika’s responsibility for this life was over and that she will leave content, peaceful and happy.
Over that week, I felt myriad emotions — almost as if I was being churned inside out. I felt shock (of not knowing what happened), of denial (this can’t happen to me), of anger (why was God being unkind to me?), of sadness (loss of my child) and whole lot of other emotions that drained me and made me cry. I was reminded of the various manifestations and forms of love — I have experienced these at various points of my life.
There is the love that binds, connects; the one that consumes, seethes in passion; the one that uplifts, helps us detach and let go. I realised that to let go was the only way to bring her closer to me and make her live forever in my heart, in my being. I was also reminded of what as a mother, I expected of her — to grow up, find her own feet and set her off on a journey of her choice. My role was to facilitate the preparation of this journey of her choice. I realised that she was ready — it didn’t need her to grow up to be an adult, she was ready at 9 years of age! As her mother, I had to stand by her in her decision so I did…..I set her off with love, prayers and my devotion to her. I experienced pure love in seeing the thousands that prayed for her, who came to see her, to love her, to hug her, to kiss her — each desperate for a miracle.
Fadhila forgot about her own daughter’s grief and spent a whole night next to Nainika! I thought to myself — what is it that makes us forget our own grief and rejoice in the other’s joy? It is pure love — the one that uplifts! I finally became a mother — Nainika’s Mother.
We live in difficult times where hatred is easier to breathe than affection. Nainika has taught us all a lot of things, lessons that we can reflect on and attempt to be better people.
Today, I realise how futile, how insignificant we all are — so helpless in the face of time. Yet, in that insignificance, we have the potential to make our life count and that is the biggest lesson I have learnt, thanks to my daughter. She will forever remain alive in my heart and will guide me as she always did. I remember her with a smile for the many funny stories she told me, for the many secrets she shared with me, for the limited time she had with me yet that which fills up my heart with an overwhelming affection.
She has moved me closer to spirituality — I am far from being learned but the quest for doing my bit continues.
Yesterday, a month from that tragic incident, I gathered some courage to look through her notebooks and found a little note in her classwork that I would like to share with you:
Thursday, 1st December 2016
“I would be a snowflake because I would be able to fall gently gently down and children could play with me. I wouldn’t want to be frost on a leaf because people could knock me off and stamp on me.”
4. What is the foundation that you have started called, and what is its main aim?
We propose to call it the Nainika Tikoo Memorial Foundation for Allergy Care and Brain Research.
The main aim of the Foundation will be to build a facilitative environment, socially and medically for allergy sufferers. This we aim to do via:
a. Building awareness on allergies in children and support needed to manage allergies outside of family control environments.
- Make allergy testing in children (0 years to 7 years) mandatory (similar to vaccinations)
- Ensure schools are able to administer life saving measures such as the epipen to allergy sufferers — for them to have in stock spare epipens to administer in case of emergencies.
- Ensure better Primary Care and Public Health facilities and provision of medication, referrals and support for allergy sufferers and families.
- Make it mandatory for School Meal providers to have a detailed allergy advice and to only be given school meal contracts if they are able to provide for allergy food.
- Support research in allergy care and treatment including gene mapping for early diagnosis of potential allergies in children
- Address systemic gaps in allergy awareness and care in the UK
5. How much money has it already raised and how much more is needed?
The fundraising appeal on justgiving (online fundraising) has raised nearly £14,000. The appeal was originally for about £2000 over a period of 30 days. The money raised was originally planned to be donated to allergy research organisations. In order to give special attention to the various strands of work that this entails, we decided to set up a Foundation in Nainika’s memory. We do not know yet how much more is needed — we will take it one step at a time. I am sure in time, more individuals, charities and government will be able to focus money, time and resources to allergy care. It is difficult to ascertain how much more is needed.
6. Where will the money be used?
The initial funds raised will be divided to making a donation to Allergy UK who have been working in the space of allergy awareness and research.
The discussion is currently underway to try and part fund a studentship aimed at allergy research focussing on asthma and its association with allergies.
We would also like to keep some funds to support awareness building by inviting allergists to visit schools and communities as well as GPs to understand the gravity of allergy ignorance. I am hoping that we are able to encourage people to become champions of this cause and build more awareness around it.
7. Finally, tell us about where you have found this astonishing love, strength and courage even at this moment of extreme sorrow.
Khalil Gibran, a Lebanese writer, had to say about joy and sorrow in his book, The Prophet:
“Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter’s oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, “Joy is greater than sorrow,” and others say, “Nay, sorrow is the greater.”
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.”
~
