In this story Ellie’s father describes Ellie’s short life. Ellie had Type 2 Gaucher disease.
“It was Sunday the 6th of July 2003 at about 04.55 am when my wife Jill went into labour. As our son Cameron was only four years old we called my mum and said we would drop him off on the way to the hospital. We were all excited especially Cameron who could not wait to have a baby brother or sister.
At 07.01 am we had a beautiful blue eyed baby girl Eleanor Lily. As it turned out to be quite a traumatic birth and Ellie was a bit dazed, she was taken to special baby care for observation, everything turned out to be fine or so we thought and she was released the next day. We were so happy and Cameron doted on here. Everything seemed to be perfect until early September, when as my dad was holding Ellie she seemed to stop breathing and turn blue. This was absolutely terrifying. We rushed straight to the hospital, where the doctors’ diagnosed reflux and our baby girl was prescribed gaviscon.
This was just the beginning, Ellie started to have seizures which became more frequent, eventually after being admitted to hospital to have more tests it was found our little girl was having problems swallowing so she was transferred to the Royal Victoria Infirmary in Newcastle. Ellie was put in the special care baby unit as it was thought her feeding and breathing tubes might be reversed so she had to have a bronocohosopy, this came back negative so we were back to square one.
On the 18th November 2003 the doctors suggested Ellie might have a metabolic disorder called Gaucher . “What was this” we said? Ellie would have to have a bone marrow biopsy as if she hadn’t been through enough.
On November 19th 2003, our son Cameron’s 5th birthday he stayed with us in the hospital so we could see him open his presents and see his baby sister. Little did we know this would be a day we would never forget. We received the most devastating news imaginable.
Our little angel Ellie had Type 2 Gaucher disease and she would only have a very short life.
The doctors suggested we keep Ellie in hospital but we knew instantly we wanted to take her home where we could care for her and feel some sort of normality, not just for us but Cameron as well. We obviously could not tell Cameron what was wrong with his baby sister but it’s as if he knew, he helped set her feeding machine up, give her medicine and even suction her, it was unbelievable.
The next months were the most heart breaking of our lives, even though she was terribly ill she still managed to smile and every time she heard her brother’s voice she would get excited.
Even though we were told the outcome of this terrible disease, we could not just do anything so we emailed every possible doctor imaginable from America to Israel, and also took Ellie to Great Ormond Street Hospital in the search for any sort of hope, but to no avail.
On the morning of the 9th February 2004 Ellie’s breathing became worse so we took her to our local hospital where we got the news we had dreaded. For the last three months her throat muscles had collapsed and there was nothing that could be done except try to make her as comfortable as possible. Later that day, with all her family present and in our arms, our precious little girl left us to be an angel.”