For some families who need to bring their child to hospital, they face the unbearably sad reality that they don’t get better. Families like Fiona and Keith, whose daughter Ava sadly died at 15-years-old.
Mum Fiona says: “Ava was known as a diva! She had quadriplegic cerebral palsy so couldn’t walk or talk, but she communicated in her own way. She was a very happy girl, she loved life and cuddles – she always wanted you beside her.
“When she was born, Ava was clinically dead. The midwife hit the emergency button, scooped her up and ran. We were told she would only survive a couple of hours. She gave us 15 years.
“She was resuscitated twice and put on a ventilator. We had to call our family and say, ‘We’ve had our baby, but if you want to see her, you’ll need to be here in the next hour.’ We couldn’t take in what was happening.
- Fiona, Ava's mum
“I had imagined bringing my baby home to cards and balloons and feeling overjoyed. But the first time we came home was without her. I had to leave her in the hospital, hooked up to so many machines, knowing at any time she could pass away.
“We became regular visitors to the Sick Kids. We used to say we had a season ticket. There were so many operations, so many 999 calls. Every time we visited there was another problem, another medicine, another diagnosis. Every time she was on oxygen we thought, ‘Will she ever get off?’
“Life changed. We always had a hospital bag packed. At least five times, we were told she was gravely ill and to prepare for the worst. The not knowing is so hard. Your guard is always up.
“We always knew we wouldn’t have her forever. From day one, every day was a bonus. But when we were referred to Palliative Care, it was terrifying. It made it real.
“Things started changing quickly. We had more hospital visits, and then Ava had a 15 hour seizure. We knew then that we didn’t have long left with her. I think she knew herself. She had been crying, which wasn’t like our smiley girl.
“Ava died at home, and we were there with her. Her passing was peaceful and beautiful, and she died with a smile on her face. We think she wanted to make it as easy as she could for us. It was very surreal and took us a long time to accept.
“Thanks to ECHC, we were able to do lots of memory making before Ava’s passing.
“We did our handprints as a cast and were given a lovely blanket that all the family have written on. Everyone we know has one of the lovely knitted elephants. They bring so much comfort.
“We were given a beautiful memory box, and we wear the forget me not pins from this daily. It’s a box that is sometimes closed, but we can open it back up whenever we want and bring back the memories, to remember our wonderful daughter, who will never be forgotten.”
While most families continue to celebrate the ‘firsts’ – the first steps, the first words, the first tooth – some need your help to mark the lasts.
By donating today, you will help families like Ava’s cope with life without them. Thank you.