When Ella died at the age of 22 from a rare condition, her parents were supported by our charity.
Ella, of Derbyshire, died in May 2018. She had Holoprosencephaly – which is caused by a brain malformation in very early stages of pregnancy.
Ella had many complex medical needs including a bi-lateral cleft lip and palate. “We were told that she may not reach her first birthday, which was devastating news,” said mum Jane.
“The following days, weeks and months were filled with frequent hospital visits and numerous tests. Each time her father, Andy, and I, attended a medical appointment we seemed to be given more bad news.”
At three-months-old, Ella started to experience seizures. She was also diagnosed with Diabetes Insipidus, which meant she was frequently sick. Three months later, she had a gastrostomy tube inserted.
“Sleep was a precious commodity and we were lucky if we got more than three hours sleep,” said Jane. “Looking back the sleep deprivation was the hardest thing to deal with. We already had a toddler, Joe, so life became very difficult.”
When Ella was around six months old, the family were referred to us. “We found our first visit very difficult as were still under the illusion that Ella wouldn’t need the level of care as some of the children and young people we had seen on that visit,” said Jane.
“We decided that the time wasn’t right for us to access their services. It wasn’t until our third child, Charlie was born in 1998 that things came to a head. We were so sleep deprived that one day I drove myself to Rainbows and knocked on the door asking for help. We were welcomed with open arms and from that day we never looked back.
“It felt like a great weight had been lifted from our shoulders. We had finally found somewhere that we could leave Ella, comfortable in the knowledge she would be well cared for and all her medical needs met. Ella would always have a huge smile on her face when we dropped her off and equally would have the same smile when we arrived to pick her up.
“After the birth of our fourth child, Daisy in 2000 we were having more regular weekend respite breaks which allowed us to spend quality time with Ella’s siblings. This allowed us to do simple things that most other families would take for granted.
“Rainbows also offered sibling days where our children could meet with other families who were in similar situations. They thoroughly enjoyed these days and helped them come to terms with having a sister with additional needs. They even got to stay at the hospice on sleepovers on several occasions which they thought was amazing.
“When our youngest daughter turned five, I was suffering with depression and Rainbows were there to help by increasing our respite breaks and offering family therapy.”
When Ella was 22, she was taken seriously ill and was in hospital with a collapsed lung. “As she was 22, she had to be admitted to an adult ward which was completely the wrong environment for her as physically she was still a small child,” said Jane. “We contacted Rainbows and they were there in a flash. Two members of the Care Team came to the hospital to give us a break. They stayed with Ella whilst we were able to go and get a coffee or something to eat.
“Unfortunately, after fighting for nearly 10 days her body was just too weak and she passed away. Our first call was to Rainbows and again they were there for us. They arranged for Ella to be moved to the special Bereavement Suite at Rainbows. Once she was there, we were able to visit whenever we wanted. The staff were just amazing in the love and support they showed to the whole family and we were allowed to come and go as and when we wanted. I truly believe this played a massive part in the grieving process and allowed us all to say our final goodbyes.
“In the weeks and months following her death the Rainbows team offered support for us all in different ways from counselling to bereavement groups.
“We tell anyone who bothers to listen that we are the family we are today because of the love and support of Rainbows. We would urge anyone who can and is able, to please support Rainbows so that families like ours can continue to receive the care and support that is so important.”
We contacted Rainbows and they were there in a flash. Two members of the Care Team came to the hospital to give us a break. They stayed with Ella whilst we were able to go and get a coffee or something to eat.