“We’ll cross that bridge when we come to it” has become a well-worn phrase for Megan and Ian when applied to the health challenges faced by their five-year-old daughter, Hallie.
The couple need a good dose of pragmatism to cope with the many unknowns that come with a diagnosis of osteopetrosis, a rare and life-limiting genetic condition that can result in bone fractures, restricted height, frequent infections, sight loss and hearing impairment.
The family’s first bridge to cross was the discovery that Hallie, then five months old, was blind.
“We decided it wasn’t the end of the world, we accepted that and carried on,” recalls Ian. “But Hallie was often poorly with what we thought were unrelated problems, and then, just after she started walking at 14 months, she had a light fall and broke her arm.”
The diagnosis, when it came, left Ian and Megan with many unanswered questions. “There’s not enough known about osteopetrosis,” Ian said. “But we were told she could die before two, and that many children do not survive past 10 if they do not receive treatment.”
Hallie did get the life-saving treatment she needed – a bone marrow transplant that means her bones are now healthy, although they will always be fragile. But her sight cannot be restored, she remains at risk of recurrent infections which frequently land her in hospital, and neurological problems may lie ahead.
So the respite care Hallie receives at Demelza Kent is a huge boost to the family, including her big brother Logan, aged eight.
“Hallie loves it there and it is time for us to spend with Logan,” said Megan. “Usually when he sees me packing a bag it’s because Hallie is going into hospital and he has to go and stay with his grandparents, so it makes a big difference to him.
“We can’t leave Hallie with anyone else. Her grandparents love being with her but her medical needs are too much for them and they would be scared to be in charge. To take her somewhere where the care team know exactly what they are doing means we can relax.
“Depending on how Hallie feels, sometimes we all stay at Demelza and sometimes we leave her overnight and take Logan out to do something she couldn’t do, like ice skating. He actually likes it best when we all stay because there is so much for them to do and he loves it there as much as she does!”