Ella was born on 10th October 2012 at 11.45am weighing 6lbs 14oz, she was a perfect healthy little bundle of Joy.  We called ourselves the 3 bears, Mummy Bear, Daddy Bear and Baby Bear but as Ella grew older and was no longer a baby she became Ella Bear.

However at 3 months old it was suddenly apparent that something wasn't quite right with our little girl.

Ella suffered her first seizure and we rushed her to Gloucester Hospital where after a full night of tests she was diagnosed with Lissencephaly and was later confirmed as having a rare disorder called Miller-Dieker Syndrome, her conditioner and severity had odds of 1 in 17 million - we had won the lottery no-one wants to win. The syndrome is a genetic disorder but not something we carry and means Ella's brain did not fully develop and was therefore completely smooth.  As soon as she was diagnosed we were aware life would not be the same again.  Ella would never be able to hold her own head, sit, walk or talk and would require round the clock care.

We were absolutely devastated by the news but right from the start we made the unbearable decision to make Ella's life a short but happy life rather than putting her through the pain and misery that would come with trying to prolong it even for just a short time more.  Although Ella's life would not be a long one we would make it the best we could, as we never knew what tomorrow would bring.

The first few months were a very steep learning curve.  We had to learn and understand medical procedures, juggle multiple appointments a day, deal with seizures every day, manage medication levels and try and come to terms with what was going on whilst still trying to give Ella a happy life.

We were introduced to numerous organisations along our journey including Acorns Children's Hospice in Worcester and the James Hopkins Trust in Gloucester.  These hospices are amazing places and you don't know they even exist until you need them.  They helped us get the most out of Ella, whilst supporting us as parents.  As Ella had to be watched all night we often didn't get much sleep so they offered us respite and Ella would have fun at a sleepover with other children.

As time went on we adapted well and we crammed as much in as possible, as no-one could give us an estimate as to how long we would have Ella, all they could say was she would never live to adulthood.  Ella loved swimming so we tried to take her as much as possible.  We managed to take her on holiday a few times and did loads of days out and took her wherever we went.  The summers were always easier as there aren't as many infections around so we managed to stay clear of the hospital for most of it.  Winters were not so good and we had a regular bed in Gloucester Royal Children's Centre but we made the best of it and became very close to the staff there.  Life was really hard and a daily struggle but we had to make the best of it for Ella.

We celebrated her two birthdays and Christmas' as if each one was the last as we never knew whether they would be or not.  We made the most of the time we had and can easily say she was a happy little girl and she loved nothing more than a cuddle on the sofa.

She had a real cheeky personality and would soon manage to tell you in her own way if she wasn't happy with you.  She had a way of making everyone she knew smile and touched so many peoples lives.  She loved bright lights and the colour yellow so naturally loved Pooh Bear and Minions!

As Ella became older she had even more complications, she was fed via an NG tube inserted in her nose and after a year and a half of waiting she finally had her surgery to insert a tube directly into a stomach which meant no more tube on her face! However as she got older she suffered from more chest infections each year and each one left her lungs more scarred.  Ella was a real fighter and was always proving doctors wrong.  We had been told on a couple of occasions that she wouldn't make it through the night but were always back home by the end of the week.

In 2014 we celebrated Ella's 2nd birthday at home and threw her a big party as it was the first big milestone the doctors had told us to aim for.  She missed her main party as she had another chest infection and was in hospital but the staff threw her another on the ward so the diva got 2 parties!

We managed to keep her out of hospital for the rest of the winter which meant we got to spend Christmas in France and take her to Disneyland which was amazing and will leave me with memories I will never forget.

On January 2015, 2 years to the day that she was diagnosed Ella was admitted with another chest infection.  It was a severe one with full pneumonia in both lungs and the doctors were worried.  It was always difficult to tell with Ella as she had a way of recovering suddenly.  But after a few days it was clear that this was worse than any other.  On 18th January we knew what was coming and moved to a private room so we could focus on Ella.  We spent the whole day cuddling and watching TV while she slept on us.  Other than being in hospital and Ella being on oxygen it was a perfect day. Then just after midnight at 00.08 on 19th January whilst in her sleep with both of us at her bedside talking to her, Ella passed away.

It was the worst thing to happen but in the best possible way.

She taught us so much in her short little life.  She brought us closer together, she made us realise that the little things don't matter and most importantly to do what makes you happy today as you don't know what tomorrow brings.

Ella touched so many people, her family, friends, parents, medical staff and even people that have never met her.

We wanted to do something meaningful in her memory and to help those in a similar situation to us.  We were lucky enough to receive help from charities and hospices and had a great relationship with the hospital.  If we can give someone else the opportunity to have some quality time with their disabled child or can help improve their quality of life even if only for a short time then it will be worth it. 

Something as trivial as a seat to sit in while in hospital or the right buggy is genuinely life-changing to families like us and they don't cost the earth.  They can mean the difference between being stranded at home or making memories so please help us help others.