“As you grow older, you will discover that you have two hands. One for helping yourself, the other for helping others.” ~ Audrey Hepburn
Our daughter Ella was born in 2006. My pregnancy had been classed as ‘normal and fine’ and we were looking forward to our bundle of joy as all parents do.
At 36 weeks, life changed dramatically and our story began. A consultant spotted possible problems and thus started Ella’s journey into life.
When she was born, we were initially told that she had Downs Syndrome owing to her single palmer creases. We realised fairly quickly that the hospital and specialists didn’t know anymore than we did what the matter was. So we waited for the genetic testing and the outcome: A chromosome disorder, which included the unheard of condition Aniridia.
While we were being talked through the problems that lay ahead for Ella, and trying to cope as new parents at the same time, we swung between extremes of managing and not coping at all. It was such a frightening time for us. What was meant to be a joyous occasion was a journey into the terrifying unknown.
Breath of life….
She had breathing problems for her first 18 months of life, which resulted in visits to Great Ormond Street and using a 9cm tube in her right nostril, which I had to make up and insert each evening. She eventually saw the back of that when she was 2 years old and promptly stood up and walked! We never thought we would see that happen!
The ‘C’ Word….
Unfortunately our happiness was short lived as the month following, during a routine scan of her kidneys, they spotted bilateral lumps. While we knew this happening was a possibility from day one, we thought she had bypassed that horror.
We had been forewarned and knew what would happen, but NOTHING can prepare you for your child to have chemotherapy and its side effects and serious surgery. 2009 was a very long year for Ella and for us to watch as she endured the treatment. Her strength of character and resolve shone through and made us very thankful for the tiniest things in life.
In true Fairy Queen Style Ella triumphed through that long year and had a clear CT scan after her 3rd birthday.
It’s a kind of magic….
Ella coped with things in the first 4 years of her tiny life that most of us would never have to cope with in an entire lifetime. She has done so with pure strength of character, laughter, determination and the energy worthy of an Olympic athlete!
Save Ella’s Sight….
We know that the reality is Ella's sight could be lost or become very poor; such is the nature of Aniridia. However, thanks to the amazing hard work, kindness and support of so many people who have done events and donated to the campaign over the last 2 years, Dr Victoria Tovell was able to be put into post a year ago with Professor Julie Daniels to make 'Project Fairy Queen' a reality.
Since this happened, the research team has been working tirelessly and is making great strides and we hope to update you with some more details after a visit to see the team at Moorfields later this summer.
Thank you for reading this, from the bottom of our hearts and thank you for continuing to support the Shine the Light on Aniridia Campaign, and Ella the Fairy Queen and those in her shoes.
Elly, James, Ella, Reuben and Hattie