West Bridgford parents Deborah and Ben Henley have five children, two of whom have life-limiting and extremely complex conditions.
They have never been on a family break, they have never even had a night away as a couple, but the Henleys say that staying at Rainbows Hospice for Children and Young People is “like a holiday”.
They are now urging people to support Rainbows’ fundraising appeal as the charity faces loses of up to £1 million because of the Covid-19 crisis.
Rainbows is a godsend,” said Ben. “With two of our boys being ventilated, it really is the only way we can do anything as a family. The kids love it and they call it our holiday. We are all cared for so much and have all the support we could ask for, which gives Deborah and I that little bit of respite that we so desperately need.”
When Deborah (33) and Ben (37) found out they were expecting their third child, a little brother for Tyler (eight) and six-year-old Kyle, they were delighted. But when Jude was born at 30 weeks he suffered extreme breathing difficulties and had to be resuscitated three times. He spent a month in the Neonatal Intensive Care Unit.
Even when he was allowed home, the family would find themselves constantly back at the Queen’s Medical Centre as the breathing problems continued.
“I kept thinking, this is not right,” said Deborah. “We just didn’t know what it was. He underwent a lot of testing. In the end, we refused to bring him home because his breathing problems couldn’t be explained. That was when the worry sunk in. We knew there was something wrong with him but we didn’t know what.”
Because his airway was 50% narrower than it should have been, Jude was fitted with a tracheostomy. “We knew he was going to have a trachy so we had read up on everything and felt prepared,” said Deborah. “What we weren’t prepared for was him not being able to cry. Not hearing his voice was so hard.”
Jude also has Cerebral Palsy and Epilepsy. Ben says his son’s mobility is hampered as he has tight muscles and gets tired very quickly.
In January 2016, McKenzie was born at 31 weeks at Nottingham City Hospital. At the time, Jude who was 14 months old, was in the QMC. Ben and Deborah had to divide time between both hospitals as well as caring Tyler and Kyle.
“As soon as he was born, we just knew,” said Deborah. “He had the same symptoms as Jude. He couldn’t feed, he couldn’t eat and breathe at the same time. When he was four months old, he too was fitted with a trachy.
“This time we felt we were more prepared. It was exactly the same diagnosis as Jude and he too has Cerebral Palsy. McKenzie was in and out of hospital for months, including nine months in intensive care.”
In February 2017, the family welcomed Acacia to the family. “Thankfully there were no health concerns with her,” said Ben.
The family first came to Rainbows in 2017. Jude and McKenzie, who are both in wheelchairs, receive one on one care from Rainbows’ specialist staff and their siblings are also kept busy. For mum and dad, it is much needed respite.
Ben said: “We just love Rainbows. When we first went, it was definitely an eye opener to the boy’s conditions and also seeing other children and the range of conditions that children can have.
“Rainbows is a place for us all to be a family. We go swimming. To go swimming anywhere else would be a military operation because the boys are ventilated and we can’t ever do it. They all love to swim at Rainbows. There is also so much for the siblings to do, we are welcomed as a family. Not just Jude and McKenzie. We can always do what we want to do because everything is so integrated.
“We also have time to be parents, rather than carers. We get to take a small step back and it is also respite for us. We would encourage people to support the hospice in any way possible to help families like ours.”
To donate to Rainbows, visit rainbows.co.uk/donate or call 01509 638049.