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Spirited, determined and brave.
Three words that mum Jane Price would use to describe daughter Connie, who has a rare and complex lung condition called Pulmonary Arterial Hypertension (PAH) and receives care at The Nook.
The ten-year-old, who particularly enjoys art therapy, was diagnosed when she was three, having been poorly for the previous year to 18 months. She underwent lots of tests and investigations and spent three months at London’s Great Ormond Street Hospital. A Hickman Line was fitted which she continued to need for the next three years. Her family had two options at that early stage – either a heart and lung transplant or to sign up for experimental surgery that had only been carried out on one other person in the UK (and only about 20 in the world).
“We felt the experimental surgery was too risky and having a transplant would be safer,” said Jane, a headteacher from Harleston. “However, it turned out there was long waiting list and we were told we couldn’t hold on that long, only for her condition to decline. It meant we had no choice but to go for the experimental option, so that’s what happened, shortly before Connie’s fourth birthday and Christmas 2017.
“It was terrifying but, incredibly, she sailed through the surgery and was back at nursery within three weeks. It’s amazing and she remains in a stable condition. Because the surgery is new and there’s no real history, there isn’t much data and everything is based on estimates. She may need more surgery in the future, although we’ve been told having a transplant is now out of the question because of the surgery she’s already had, it would be too complex and high-risk and just not viable. However, she’s been so brave and doesn’t let anything stop her or hold her back. She shouldn’t be here now but she’s fought every step of the way.”
Connie and her family moved from Essex to Norfolk three years ago this August, at which point they were referred to East Anglia’s Children’s Hospices (EACH) and The Nook by Little Havens Hospice, in Southend. Jane admits it has been a “lifeline”, even though she was reluctant initially.
“It’s the little touches that make the biggest difference and we get help with things that I wouldn’t otherwise know where to start with,” she said. “Life would certainly be much harder without EACH. It’s a lifeline to families like ours but it’s unfortunate there’s such a stigma around the word ‘hospice’. I admit when it was first mentioned to us, I resisted. My immediate thought was ‘we don’t need that’. We know differently now and absolutely wouldn’t be without EACH. However, there’s no doubt it’s a barrier for families in the early stages.”
Jane says The Nook has become a “safe space” for Connie, and the care offered to the whole family has also helped eldest daughter Lucy, 12.
“Connie has normal cognitive awareness and is old enough to have some understanding of her condition,” she said. “However, she finds it hard to process sometimes and struggles mentally. That’s why play therapy and now art therapy have been so important for her. It gives her a safe space to talk about her feelings with people other than myself and her dad. She knows she can say whatever she wants in those sessions, which really helps her cope.
“The Nook is somewhere she knows and feels comfortable, which is important. When she walks in, it’s like she owns the place – like it’s her hospice.”
Lucy also benefits from the support her family receives and particularly enjoys sibling groups.
“She’s been seriously affected by everything we’ve been through,” said Jane, who is married to Jon. The couple also have another daughter, five-year-old Annabelle. “At the time, she knew something was very wrong with her sister but wasn’t old enough to understand. Even now, when Connie has a regular, planned hospital appointment, she retreats into her shell and starts to panic. Being able to spend time with other brothers and sisters who might be experiencing something similar is very helpful and reassuring to her.
“Jon and I are extremely proud of all our girls. Connie’s a real fighter and, in the nicest way, I call her my beautiful little monster, because she’s brave and mighty, despite her size. She’s been born with a magical strength and is fierce and stubborn beyond measure. She never gives up and roars louder when things get tough. She reminds me very much of myself as a child. She’s full of spirit and certainly has fire in her belly, which she’s needed every last drop of to get through everything she’s been through.”
