This month the charity we will be looking at is The Beatrice Octavia Iris Smith – Brighter Future Fund. We aim to help build awareness for this great charity and will be featuring it all month. Beatrice’s mum Leigh Smith tells us more about her story…
On November 28th 2013, our daughter was born at the Norfolk and Norwich University Hospital in Norwich. Beatrice Octavia Iris Smith became an instantly loved new addition to our family, a little sister to her big brother Elliott who is three and a half. She had a crop of flame-red hair and the most stunning brown eyes which won her many fans. She was small but seemingly healthy and we couldn’t have been happier as a family. For six weeks we enjoyed a normal life as a new family of four, enjoying Christmas with our beautiful Bea. Our amazing little girl, completed us as a family.
Sadly on the 10th January, she became unwell and our local GP sent her to the Childrens Assessment Unit at the Norfolk and Norwich Hospital. It was discovered that she was in cardiac failure and that something was majorly wrong with her heart. It was later confirmed by Great Ormond Street Hospital (GOSH) that she had a very rare disease of the cardiac muscle: restrictive cardiomyopathy. Such was the rarity that we were told she was one in a million. We as a family were in shock that our little girl could have been so poorly and we had no idea. She was so perfect.
After a few days in hospital in Norwich we were transferred to GOSH for further investigations. Her prognosis was poor, and her future uncertain and as a family we were devastated. Our joy and excitement became despair. We vowed to create as many happy memories as we could, in whatever time we had left. Unfortunately only a day and a half after being discharged from GOSH, Beatrice deteriorated and so we took her back to hospital where she required a feeding tube. Despite this, Bea continued to show no fear, blessing us with plenty more smiles and joyous moments. We held her and watched and captured timeless photographs and memories in our hearts and minds. The strength she showed to give us those moments was gigantic, given the severity of her condition.
On what turned out to be the final day we had at home in Norwich with Beatrice, we enjoyed an afternoon in our beloved local park. Splashing around in the puddles, we were able to forget sadness and embrace happiness, enjoying each other and our beautiful Beatrice. Sadly just hours later our little girl deteriorated again and began to really struggle. She required emergency ventilation and transfer to the Paediatric Intensive Care Unit in Southhampton awaiting a bed back at GOSH. After three days we headed back to the Cardiac Intensive Care Unit (Flamingo Ward) at GOSH aware her fight had become harder still.
Over the next few weeks our immensely brave girl battled so hard giving everything she had. The team at Great Ormond Street were incredible. They gave her every chance they could. The courage Bea showed for someone so young was inspirational. She made it to the top of the UK heart transplant list and continued to fight, surprising the doctors with her tenacity for life on a number of occasions. In her time at Great Ormond Street I told her story and she inspired so many people to raise money, join the organ donation register, give blood and just appreciate life and love and those around them more.
Sadly her mountain proved too hard to climb for someone so young and she became frailer and weaker. As a mother watching this was agony. On 24th February 2014 she sadly passed away in my arms at Great Ormond Street, holding her mummy and daddy’s hands. We were and are devastated.
We will miss her every second of every day. Her courage and bravery are now our inspiration. GOSH and all those who work within it, gave her the chance of life and the most graceful and peaceful death we could ever have asked for. We never thought we would have first hand experience and really wish we didn’t, but we are so thankful that our beautiful Beatrice was cared for with such compassion by such amazing people They were there for her and for us. The support and kindness shown to our family in the most difficult of times was, and is, immeasurable. This hospital and every single person we came across were truly exceptional and world class. We will forever be grateful to them for everything they have done for our beautiful girl and they will always be a massive part of our lives.
There is no price that can be placed on this, nor anything than can mend our heartache and bring our little girl back, but giving, spreading the word of Beatrice’s page and making as much as we can for this incredible hospital will help other children and their families like us. Through this, the positive legacy of our beautiful Beatrice will live on. The Beatrice Octavia Iris Smith Brighter Future Fund now takes on a new importance in trying to raise £43,000 towards a heart and lung bypass machine at GOSH to give others like Beatrice a chance. Please help us help other children, children just like Bea. Thank you. ”
If you would like to make a donation to this wonderful cause, you can do so by visiting the Beatrice Octavia Iris Smith Brighter Future Fund JustGiving Page.