News / Life-limiting Illness
‘I knew what medications were needed and when – I was the second carer’
At Jessie May Children’s Hospice at Home, the importance of the whole family is noticed.
It is not just the parents that are a support system during life-limiting or life-threatening illness but siblings too.
The charity tells the story of 21 year-old Freya and “cheeky monkey” Harry who has complex medical needs.
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At just 14, Freya welcomed her new twin siblings, Harry and Bonnie, home.
She quickly took on more responsibility that most teenagers,.
Recognising the role she had as a sister and supporter became more significant as the challenges of life-limiting illness began to reveal themselves.
But of all the challenges, its the looks and stares they get that bother her.
She explains, “people staring at him made me angry. We were always happy to answer questions, but the staring really got on my nerves.”
“I knew what medications were needed and when – I was the second carer.” – Photo: Jessie May
The biggest positive for Harry’s family was the Jessie May nurses who made living calmer and more manageable, giving Freya a moment to breathe and just be Harry’s sister.
“We’re not just there for the child – we notice the siblings too,” said a Jessie May nurse.
“We see the love, the responsibility, the quiet sacrifices they make. Supporting them, even in small ways, is such an important part of the care we give.
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Typically, Freya begins the day filled with music for Harry and Bonnie, making sure the house is full of “activity and love.
“If things escalate and he needs to go to hospital, I’ll usually go in with Mum and Harry.
“I deal with hospitals better, and I tend to make notes so Mum can focus on what’s being said and read it over later.”
When things begin to overwhelm Freya, she turns to her support system: her dogs and her aunt.
They help to ground her and stay positive. She admits, “it’s a lot to take on as a teenager.”
Despite this, Freya stays perceptive on the impact of Harry’s condition on her family’s life.
Recognising there will be things they miss out on but at the same time, nothing changes the fact that Harry is her brother.
“Family is more important than anything – especially when tomorrow isn’t guaranteed.”
Jessie May believes the families voice’s deserve to be heard, because while their health might not be in danger, their wellbeing is just as vital. The charity is campaigning for awareness and support for siblings just like Freya.
Main Photo: Jessie May
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