Saturday 17 January 2015

Remembering Emily Thackray

Emily Thackray was a committed and enthusiastic campaigner and fundraiser for the Cystic Fibrosis Trust for many years, and sat at the very heart of the community throughout her life. Emily died on 28 December 2014 and today she will be remembered and celebrated at her funeral and wake.

This blog was written by Oli Lewington, Engagement Director at the Cystic Fibrosis Trust – a friend of Emily’s – in the days following her passing.

Lots of things will be written and spoken of Emily Thackray in the next few days and weeks. She died yesterday after a second double-lung transplant proved too much for her body to withstand.

Emily’s unique ability – using unique in its literal sense, as I’ve never come across anyone with the same gift – was to make everyone she ever came into contact with feel like they were the most important in her world.

There are dozens of people who will be grieving the loss of a best friend today, because that’s who she was to everyone: selflessly sharing her love and compassion for the world with all she brushed against and, in the process, making everyone she touched feel special, feel like they mattered. She made a difference.

Equally, everyone who knew her will have their own ‘Emily’ with whom they spent time, shared laughs and cried when it was warranted. We all knew a different friend who gave different things to our lives.

My Emily came into my life in the early days of the internet when I first discovered the Cystic Fibrosis Trust forums: she was already there and dispensing support and advice as needed. I struck up a friendship with her and with some of the other frequent posters and we supported each other through tough times of losing friends that we were terribly close to. It seems nothing much changes in a life with cystic fibrosis.

When she set up the organ donation campaign (now charity), Live Life Then Give Life, with her great friend Emma after the loss of more than one mutual friend on the waiting list for transplant, I offered to help in any way I could. I ended up being one of the first Trustees of the charity and being part of the team that one Best Campaign Team at the 2008 Charity Times Awards and Best New Charity the following year.

My Emily was always one step ahead of me on my CF journey. She was the first of us to start needing supplementary oxygen. She was the first to use a wheelchair. She was the first to have a lung collapse. She was the first to be assessed for transplant and, thank God, the first to receive it. She was the first to be married after her transplant, and the first to have serious complications. Now, she’s the first of the two of us to go.

What became indelibly unique, though, was that everything she went through became a source of help and information for others. She never hid away from anything and always used her own lived experience to make it even a tiny bit easier for others going through it. She supported me as I took every step and misstep she took, a few months further down the line.

The day I finally got my transplant call I remember sending her a message and getting an immediate phone call back.

Take some paracetamol now,” she told me.

I wasn’t sure if I should, but she countered immediately, “The stress of the situation might raise your temp and if it does they won’t go ahead. Take two paracetamol now and it will drop your temp if you have one, but it won’t mask anything more serious that could be a real contraindication.”

I took them. I passed the tests. I got new lungs.

The story that sums up Emily, though, came through on my Facebook last night from one of my oldest friends and was one that I’d never heard before. This stands as testament not only to her willingness to help and support anyone and everyone, but also to be humble and quiet in going about it.

She was so wonderful when you got your call, patiently, calmly keeping me informed about the stages, what to expect, what were the good signs, what to worry about & what to cheer.

All the way through your surgery and recovery she stayed in touch, answered my many emails and sent me random messages asking how I was doing – she had volunteered herself to essentially be my support as I didn’t want to bother your parents or K too much with my need for information and updates. It meant such a lot to me and I was incredibly appreciative knowing she was a message away to answer a question or calm a worry.”

That’s Emily: friendly, warm, generous and patient. And not just my Emily, that’s everyone’s Emily.

Em, you will be missed far more than most of us can understand, but we remain ever grateful for the joy and happiness you brought to our lives, for the connections and friendships you forged that will last long into the future, and for the blessing of finally understanding one of my favourite quotes:

She was a line of poetry in a world of prose.”Polly Toynbee

Thispost first appeared on the SmileThroughIt blog. If you would like to make a donation to the Trust in Emily’s memory, please click here.


  1. Gosh Oli, that's a lovely tribute and sums up Emily and how lovely she was.

    I met her in the same place but in different circumstances and she was exactly as you've described.

    She was the most amazing, positive and resilient person I've ever had the pleasure to meet. I can imagine she will be sorely missed by very many people.

  2. What a lovely tribute to an amazing person