Four-year-old Olivia Butler has a condition so rare there have only been four reported cases worldwide in the last 10 years. She has suffered over 400 seizures a day and her parents have never heard their little girl cry.
Olivia was diagnosed a rare type of Epilepsy when she was eight months old. Her parents, Stacey and Gary say their daughter has complex symptoms of the illness.
When doctors said Olivia had a life expectancy of two years, their world was shattered. But she has defied all odds and has just turned four. Stacey and Gary, sister Evie (seven) and five-year-old brother Harry, gave her the most special birthday.
“We call her our Forever Baby,” said Stacey. "She is like a seven-month-old in a four-year-old’s body. She is tube fed, nonverbal and can’t do anything, but she has her subtle ways. She loves cuddles and snuggles.
“We are so used to the seizures it becomes normal and rather than 400 a day, she now only has 150 to 200 a day. Each time, it is always there in the back of your mind that this could be the seizure that takes her.”
Olivia needs round the clock care and for the last three years, the family have been supported by our hospice.
“Rainbows is everything to us. It is our second family,” said Stacey. “If it wasn’t for the team at Rainbows, I genuinely don’t think Olivia would be here. They are that good at supporting and advising us on everything.
“It is not just coming for a break or symptom management, it is the people and the relationships and the support. Evie and Harry get supported and we have family time. We love swimming, it is the only time we all get to go swimming. We can enjoy being parents.”
Last year the family spent four months staying at our hospice. At one point, Stacey and Gary thought they had lost their little girl. “How she is still here, we will never know,” said Stacey. “She spiralled out of control and was put on a syringe driver, which delivers medication to Olivia under her skin constantly over 24 hours.
“This really helped her. The device is usually used in end of life care but Olivia becomes so distressed without it, the decision was made to leave it in place.
“We see her deteriorating all of the time before our eyes. There is always something new and when you think she can’t throw anything more at us, she does.”
Stacey said the couple have to put on a front for the sake of their other children. “You can’t just breakdown and stop,” she said. “Although I am breaking inside. But we make the most of every day, it is all we can do.
“Evie understands now. She talks about life after Olivia has gone. Harry is starting to understand that Olivia is going to die.
“When she is ready to go, she will go. We just want to keep her comfortable. We don’t want her to be in any pain or suffering and we are so thankful to Rainbows for their support.”