The Audrey Memorial Fund for PH Research

Our beautiful daughter Audrey was born on 3 June 2019. We had found out at the 20 week scan that Audrey would be born with a serious heart defect, and that without open heart surgery within her first week of life she would leave us again soon after. As any parent would be, we were shocked and terrified by the news; but as we were soon to learn, Audrey had a very special gift for turning the most challenging of situations into moments filled with positivity and joy.

Knowing the difficult road that lay ahead, we gave her names that we thought would arm her for her journey: Audrey, which means ‘noble strength’, and ‘Emilia’, which means ‘to strive and excel’. We couldn’t have made a better choice for her, as she had all of these qualities in spades.         

        

As Audrey was born the song that was playing was ‘Boy In The Bubble’, and the line “medicine is magical” rang out. Paul Simon wrote the song as a collection of observations from the world around him, including medical advances being made at the time, and it summed up his belief that life is full of many challenges, but hope is always on the horizon.                        

For the next 10 weeks, we were to live somewhere between the two; Audrey’s heart surgery went well but she had a very rocky road to recovery on the ICU, and there were many times where she might not have made it. She charmed all of the medical staff from the start, with nurses queuing up to look after her at the beginning of their shifts. We believe that it was this constant interaction with different faces that led her to be such a sociable soul; she liked nothing better than meeting new people and making them smile.

During this time, having finally made it through some incredibly hard weeks, Audrey was diagnosed with an additional condition, Pulmonary Hypertension (PH) - a rare disease that affects around 300 children in the UK, and about which little is yet known. We were faced with impossible news: that Audrey’s life would be limited, and no-one could predict whether we had two months left with our precious girl, or two decades. The pain of learning this news was indescribable.

But Audrey’s story was just beginning, and over the following two years she taught us the importance of living life in the moment, with love unlimited. We are comforted by knowing that Audrey’s condition couldn’t have been helped and was always a part of her; and given that we couldn’t have one without the other, we would choose a million times over to have had the wonder that was Audrey in our lives, even if for a short time.

At the end of that summer we finally got to bring Audrey home, where she was wrapped up in cuddles from her grandparents and tickles from her big sister. We always had the worry of her diagnosis in the back of our minds, but she had a way of making you forget the big picture in those joyful little moments. As Audrey grew from baby to toddler her fearless nature became ever more apparent, often joining her big sister and Daddy in games of rugby on the living room floor and cackling as she went higher and higher on the swings. She was really funny too - desperate to get in with her sister’s jokes and forever pulling silly faces at dinner to make us all laugh. At bedtime, when her Mummy and sister would line up saying “Guess how much we love you? ...This much!”, arms thrown wide, she gave the best, most loving cuddles in return.

In fact, everybody loved little Audrey, from the nurses who would receive a wild round of applause from her as they started their morning shifts; to the doctors who sat reading to her for hours when we couldn’t be with her; to the staff in our local café who were always plying her with free biscuits. And Audrey loved everyone in return, even blowing kisses to medical staff straight after they had given her her latest blood test.

We believe that it was this combination of magical medicine and noble strength that allowed Audrey to live such a full and happy life. She achieved so much, particularly in her final few months, and we will always be grateful to the PH and Palliative teams at Great Ormond Street Hospital for making that happen. 

In the summer of 2020 Audrey’s condition suddenly worsened and she had to be fitted with a special medical pump that carried a life-prolonging drug straight into her heart, which she carried in a cuddly backpack. Unfortunately Audrey’s form of PH turned out to be particularly severe, and in October we came very close to losing her on the ICU once more.

Audrey being Audrey, she pulled through against the odds once more; and the special memories from the months that followed, at home with us, will live with us forever. Completely undeterred by her medical backpack and deteriorating condition, the games of rugby continued, and we followed her lead in allowing Audrey as much freedom and adventure as she wanted...and she wanted a lot! From meeting giraffes to roaring at dinosaurs, to dancing and singing to Peppa Pig at every opportunity, Audrey never let us look beyond the fun to be had in the present moment. It will forever be the achievement of our lives that in her final months, Audrey had the time of hers. 

After her very peaceful passing, which happened in her sleep on 14 May 2021 following a day filled with cuddles at home, Audrey left her friends at the hospital a special parting gift: A tissue donation - the first to be given post-mortem by a child with PH in the UK - which will be stored for medical research at Great Ormond St, and which we hope will one day help find the cure for PH. Audrey loved other children, and we can think of no better legacy for her.

So many kind people have asked us where to direct donations in Audrey’s memory, and so we have set up this page in her honour. The Pulmonary Vascular Research Institute (PVRI) is a UK charity that joins together medical professionals specialising in PH from across the world. Its main aims are to improve patient care and to find new drugs and treatments for patients who suffer from PH, with the vision of one day finding a cure. 

Thank you so much for reading Audrey’s story. We hope you view it as we do; not as one of tragedy, but of triumph. Not a life ended, but completed. We miss Audrey terribly, but know that her short, beautiful life will forever inspire us and everyone who knew her, and we will always be so proud to talk about her. 

 

  • Anonymous 
    • £20 
    • 4 mos
  • Lucy Denver 
    • £100 
    • 7 mos
  • Silvia Jakob 
    • £50 
    • 8 mos
  • Anonymous 
    • £200 
    • 8 mos
  • Harmony Johnson 
    • £50 
    • 9 mos
See all

Fundraising team: Team Audrey (2)

Eleanor (Audrey’s mummy) 
Organizer
PULMONARY VASCULAR RESEARCH INSTITUTE 
Registered nonprofit
Donations eligible for Gift Aid.
Sam (Audrey’s daddy) 
Team member