Zac Bennett is 12 and lives in Maidstone with his parents, Caroline Baker and Lee Bennett, and his younger sisters Olivia (aged 9) and Ruby (aged 5). He has an undiagnosed genetic condition and, even though his Mum says he’s had ‘every test going’ it turns out that he’s ‘unique’. However, his condition manifests itself in regular seizures and Zac is in a wheelchair.
Caroline says that, looking back, her pregnancy with Zac ‘wasn’t quite right’.
“He was my first child, so I didn’t realise that things weren’t really as they should be,” she explains. “I bled a lot and was hospitalised a couple of times. Zac also didn’t move very much. I certainly didn’t ‘blossom’; basically I felt rubbish.”
Zac was breech, so was born by caesarean and Caroline says that ‘everything went downhill’ as soon as he was born.
“The doctors noticed straightaway that he had dysmorphic features and he was rushed to intensive care,” says Caroline. “I was left on the ward in shock.”
There followed two weeks of tests and scans, which generated no real answers.
Zac came home with his parents and the family embarked on a new life of medical appointments – which have continued to this day.
Zac was referred to ellenor when he was eight.
“As Zac has got older, additional problems have come to the surface,” says Caroline. “He has a school nurse, but after school hours, we didn’t really have anyone to call for advice. So, as his problems were getting more complex, we were referred to ellenor. Now we wouldn’t be without them.”
She continues: “Our ellenor nurse, Helen, is like Mary Poppins. She just makes us all feel really special and she’s changed everything for the better.”
Caroline says that ellenor’s support from a medical point of view is invaluable.
“Helen is great at chasing up appointments and explaining medical letters to us – which are generally written from doctor to doctor and are difficult to decipher if you don’t have any medical knowledge,” says Caroline. “Also, if Zac isn’t well, she’s there for us.”
Caroline says that Helen is also great with her two girls.
“Olivia is older and seems to understand the situation, but Ruby, who is younger, sometimes finds it more difficult,” she says. “Helen is fantastic at including both the girls when she visits.”
Zac attends a special needs school near to his home, along with some other ellenor patients.
“Helen is good at keeping in contact with the school and will regularly have meetings there with the staff about Zac’s current condition, so everyone is on the same page,” says Caroline. “Zac’s medication often goes up and down, depending on his current situation, so Helen communicates that to the school for us.”
As Zac gets older, getting him upstairs is becoming more difficult. The family recently moved house to a home with the potential for enough downstairs space for Zac to have his room on the ground floor level. First the house needs an extension and Helen has supported the family by helping to write letters to the appropriate authorities, regarding the work which needs to be done.
“To be honest, one of the key things that Helen does is listen. We are first and foremost Zac’s parents and we are not medically trained,” says Caroline. “So, we need to be assured that we are doing the best for him and making the right decisions. Helen always fights our corner for us and deals with the local hospital on our behalf. She is always there for us and gives us reassurance.”
She adds: “Helen also helps us to keep Zac out of hospital when that’s possible, enabling him to be in the comfort of his own home with us. That helps us to maintain our family life as much as possible and makes it less disruptive for our girls. To be honest, Zac’s care is so complex that, even when we are in hospital, a lot of his care falls to us. So, if we can look after him at home, we’d like to do so and ellenor supports us with that.”
Although Zac has been ill since his birth, every new development in his condition is something different for the family to deal with.
“Although we’ve had to deal with this for 12 years now, in many ways it still feels fresh,” says Caroline. “Every change in his condition is something new for us to deal with. His seizures are getting worse and we often worry when to administer his emergency medication – but a phone call to Helen always reassures us. Often it’s hard to think straight when he’s so ill and Helen calms us down and reassures us that we are making good decisions. Helen is like part of our family and knowing she’s there makes life nicer.”
She adds: “Zac absolutely adores Helen. He always has a smile for her and he likes to look at her photo on her badge and makes sure it’s the right way round.”