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Nainika Tikoo Memorial Trust - NTMT UK

Nainika Tikoo Memorial Trust (NTMT UK) is a not for profit charitable Trust based in London, United Kingdom, set up in the memory of Nainika.

Nainika Tikoo Memorial Trust London, United Kingdom
£2,044.00
Raised Of £200,000.00 Goal
1.022% Complete (success)
1%
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Flexible Funding

This Campaign started on May 15 and will close on February 04, 2019, 16:19.
(UTC/GMT 04/02/2019 16:19)

Campaign Closed

Funders 18

  • £201.00

    Arya Mandal

    24/05/2018
  • £151.00

    Avi Raina

    24/05/2018
  • £150.00

    Vikas Wahi

    22/05/2018
  • £110.00

    Usha Raghavan

    30/05/2018

    You are doing a yeoman service to the cause of allergy containment in the name of NTMT. Great work and great memories of little Naina. Best wishes.

  • Anonymous

    Sourav Sengupta

    03/06/2018

    I really hope that this movement increases awareness of allergies and that no one else suffers this tragedy....Pihoo

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Nainika Tikoo Memorial Trust - NTMT UK

Nainika’s Story… 


It was a typical Saturday morning for Nainika. Mummy (Lakshmi) was at work and Daddy (Vinod) took her to her horse riding lessons. On their way back, Nainika insisted on having pancakes with blackberries. Having never eaten blackberries before, this was a pleasant demand as usually getting her to try new fruit or vegetable was a challenge. Nainika was severely allergic to milk and dairy which limited her options for food so this request was a big welcome! Both bought fresh flour (Dairy-free) and blackberries to make pancakes. Once home, Nainika excitedly waited for her special pancakes as Daddy got busy with cooking. 


Pleased with her demand being met and super hungry, Nainika sat down in her favourite spot, savouring her pancake. She took one bite of it and felt a strong reaction coming through. She ran to the kitchen to inform Daddy of her discomfort and he gave her 5 ml of Piriton. She was breathless by this time too (a usual allergic reaction in her case) and so he gave her a couple of puffs of the inhaler. With no respite, he repeated the sequence and seeing her condition deteriorate, he called the emergency services. He remembered there was an EpiPen issued to her (that they had never had to administer before) for emergency use. He quickly checked the expiry and got ready to administer it. “But you don’t even know how to use it Daddy”, said a very breathless Nainika. He read the instructions and administered the EpiPen, fortunately, the right way! She got momentary respite but only to further deteriorate within seconds. Gasping for air, she ran towards the main door. Vinod picked her up, brought her back and gave her the mouth to mouth resuscitation. She couldn't cope and collapsed within moments. The ambulance arrived shortly after and the paramedics tried to resuscitate her but to no avail. 


Nainika was declared dead on 22nd May 2017 owing to irreversible damage to the brain. 


It was at the hospital after she died that Lakshmi and Vinod met an allergist for the first time. It was here that the Allergist discussed not just the incident but also Nainika’s case history of 9 years. Shockingly, despite being on the high spectrum of allergy (cow milk protein) and asthma, Nainika was never referred to an Allergist or a specialist. The only time she had an allergy prick test was when she was 6 months old following her first encounter with a dairy allergy at the time of weaning. The next prick test took place after she died following the parents’ discussion with the allergist to ascertain the exact cause of death. Nainika was issued an EpiPen only recently after a major incident in school took her to the ICU. However, the Epipen was issued without any training to either parent and she was never referred for a formal testing or specialist advice. 


Lakshmi realized that there were glaring systemic gaps that put every allergy suffering child under an unknown risk. This coupled with gaps in research and exact understanding of causes of anaphylaxis, non -coherent research on the cure of allergies (if any) and the mystery of Nainika’s death owing to an unknown reason even though she was proven to be mildly allergic to blackberries and severely allergic to dairy. 


The shock of Nainika’s death as also the many systemic as well as research gaps have led Lakshmi & Vinod to devote their lives to the work of allergy awareness and research to prevent other families from being in their situation. 


The parents instead of mourning the loss of their only child, vowed to fight this unknown beast and tackle allergy awareness, research, cure and systemic gaps in allergy care. Thus was born, Nainika Tikoo Memorial Trust UK (NTMT UK) in June 2017.


Key Objectives of NTMT UK: 


The main aim of NTMT UK is to build a facilitative environment, socially and medically, for allergy sufferers.


The three key areas of work are: 


A. Awareness 

Run dedicated awareness campaigns in schools, neighbourhoods and communities to encourage people to learn about allergies and how to get help. Develop leaflets and make them available to the public at community centres, NHS, schools and restaurants. Fund a film (or series of films) on allergy awareness that may be shown on prime time television as well as cinemas as a public service message.


B. Access & Training

Make allergy testing in babies mandatory (similar to vaccination). Ensure schools are able to administer life-saving medication such as the EpiPens to allergy sufferers as well as have in stock spare EpiPens to administer in case of emergencies. Make it mandatory for school meal providers to have a detailed allergy advice and only given meal contracts if they adhere provide for allergy food. Mandatory first aid and allergy awareness training for volunteers and staff involved in food handling.


C. Cure (Research)

Provide small grants for Pilot Research Studies in the realm of allergy testing, de-sensitisation and brain research. Establish & implement a Nainika Gold Standard in Allergy Safety for premises handling food.


www.ntmt.org.uk


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