A Legacy that will Help Others

It’s five years since Natasha Ednan-Laperouse died aged 15 after suffering a fatal allergic reaction to hidden ingredients in a baguette on a plane. Following the death of their beloved daughter, her parents Tanya and Nadim set up The Natasha Allergy Research Foundation to fund vital medical research into food allergies and raise awareness of allergic disease. Here, Tanya reveals the progress they have made so far in keeping the 2 million people in the UK with food allergies safe, what still needs to be done and why food allergies are an issue everyone should be concerned about.

Interview by Rachel Ellis 

Natasha Ednan-Laperouse

How have you coped since Natasha’s death?

It has been extremely difficult for us as a family. Natasha’s death has left a gaping wound in our lives; her death was such a shock, so sudden and completely avoidable.  I know in my heart that she is gone from this world, but it has taken me a long time to accept this truth.  I still sometimes catch myself looking for her when I see children from her school walking home at the end of the day, wearing the same school uniform that still hangs in her wardrobe. Natasha had food allergies from when she was very little – she was allergic to milk, eggs, nuts, banana and sesame seeds.  Her first life-threatening allergic reaction (anaphylaxis) was when she was six months old to a tiny piece of banana.  Within minutes her lips swelled until they split, and her little body became covered in raised red hives. The second time was when she had dairy formula milk at 9 months; we rushed her to A&E as she struggled to breath and the skin across her body resembled that of third degree burns –  like she’d been dropped into a vat of hot oil. We worked very hard as a family to manage Natasha’s allergies and there was never any outside support. Over the years we got to a point where we thought we knew how to keep her safe.  Natasha was an incredibly mature and cautious girl around food and had not had a severe allergic reaction for over nine years before she died. Had the baguette she consumed in 2016 been properly labelled and the ingredients included the sesame seeds that were baked into the dough of the bread, she would still be alive today. Living with that knowledge never gets any easier.

“Natasha had food allergies from when she was very little – she was allergic to milk, eggs, nuts, banana and sesame seeds,”

Why did you decide to set up The Natasha Allergy Research Foundation?

Following Natasha’s inquest, we started receiving hundreds of letters from people living with food allergies or with food allergic children. They were heartfelt and the thread running through them all was the terrible fear both individuals and families were battling with their allergies every single day. More than two million people in the UK have a food allergy. Recent research published in the British Medical Journal revealed the number of people admitted to hospital for severe food allergies has tripled over the past two decades. Yet despite being a serious, unpredictable and potentially life-threatening condition, allergic disease is a ‘Cinderella’ service in the NHS, with little investment and patchy care for those affected. So, in 2019, my husband Nadim and I set up The Natasha Allergy Research Foundation to support people with food allergies, giving them a voice.

What is the aim of the charity?

We want to improve the lives of people with food allergies and ultimately eradicate allergic disease – a bold mission, but we believe that it is achievable. We are doing this by funding medical research which will look at both the causes of food allergies and new treatments. Although there are many theories about why more people are being diagnosed with food allergies, we still don’t have any concrete answers. Furthermore, treatment options available on the NHS are extremely limited. Later this year we will be announcing our first major medical trial with a number of leading UK universities which we hope will find a new, long-term treatment for people with food allergies which will then be adopted by the NHS.

Is the UK a safer place now for people with food allergies compared with five years ago?

Following Natasha’s death, we campaigned for ‘Natasha’s Law’ which comes fully into force on 1 October this year and will make the UK a safer place for people with food allergies. It requires all food businesses who make pre-packed foods on their premises for sale – such as sandwiches and salads – to provide full ingredients labelling. This will give people with food allergies the opportunity and confidence to make safe and informed decisions when buying these foods. 

“We will be announcing our first major medical trial with a number of leading UK universities which we hope will find a new, long-term treatment for people with food allergies,”

What more needs to be done?

In short, a lot. We need better allergy training of GPs and an increased number of allergy specialists and clinics across the country to ensure that people with food allergies get the timely care they need. A greater priority also needs to be given to children with food allergies in schools so that they can participate fully and safely in school life. To ensure allergies are given the importance they require, we would like to see a single designated person in Government – an allergy tsar – to ensure co-ordinated and joined-up allergy care for all people living with this disease.

“Learning how to use these simple devices should be a basic part of all First Aid training, just like CPR,”

I don’t have a food allergy, so why should I be concerned about food allergies?

Allergic disease is one of the major causes of illness in developed countries and its prevalence is increasing steadily.  Allergies affect one in four people in the UK and 2019 NHS figures show the number of children hospitalised in England with severe allergic reactions increased by 72% in the previous six years. So, understanding how to keep people with food allergies safe is important for us all. Improving awareness and understanding that food allergies are not a food preference or fad, but a serious disease is vital. In addition, we would like more people to know how to use AAI’s (adrenaline auto-injectors) as they are the only line of defence when someone has an anaphylactic reaction and buys time before medical emergency services arrive. Learning how to use these simple devices should be a basic part of all First Aid training, just like CPR.

How can anyone reading this help?

We are so proud of our passionate supporters, who help us to get the message out about food allergies. Whether you have allergies or not, allergy awareness is vital, and you can sign up to Natasha’s Army on our website www.narf.org.uk  to receive regular updates about the work we are doing or donate to help us fund medical research. You can also sign our parliamentary petition to appoint an Allergy Tsar as a champion for people living with allergies here.

Luxury Living Magazine would like to express a heartfelt thank you to Tanya for participating in this interview for our readers.