Bristol carer, 21, shares story of looking after little brother

An older sister has described caring for her little brother every day as “a gift”.

Freya, 21, became a young carer at the age of 14 after the birth of her brother Harry, who has a life-limiting condition, and his twin sister Bonny.

She is now sharing her story as part of a campaign by Bristol-based charity Jessie May, which is highlighting the importance of siblings who are carers.

Freya said: “He is my brother first, and a medical mystery second.”

Jessie May, which currently cares for more than 190 children and was set up in 1996, offers specialist home nursing support.

A charity spokesperson said it wants to raise awareness of the “quiet constants in the background”, namely the siblings of those in care, who “are just as deeply impacted”.

Freya said she became a second carer to both her twin siblings as soon as they came home from hospital, saying for a period of time she “was never without one of them”.

“If I wasn’t helping with Harry, I would have Bonny with me,” she said.

Describing the first time she held Harry, who is now seven, Freya said she was “terrified” she would hurt him.

“But once I relaxed, he smiled at me and went to sleep,” she added.

Now, she supports her mum with any important hospital visits in place of Harry’s dad, who stays at home with the children.

“I deal with hospitals better, [so it works best] and I tend to make notes so mum can focus on what’s being said and read it over later,” she said.

On the difficulties of caring for her younger sibling, Freya said she found it hard when people stared at Harry.

“We were always happy to answer questions, but the staring really got on my nerves,” she said.

We ended up making a custom T-shirt for Harry that said, ‘take a picture, it’ll last longer’,” she added.

She said she her two support systems have been her dogs and her aunt who would take her for a drive “if things got too much”.

“It’s a lot to take on as a teenager,” she explained.

Freya said although she knows they miss out on some things due to juggling life around Harry’s condition, they still have a lot of fun.

Describing her brother as a “cheeky monkey”, Freya said he has “such a personality” and she views him “no differently than any of [her] other siblings” because medical conditions do not define him.

“He can really make your day if you catch him giggling,” she said.

Freya said for anyone in a situation like hers, just “keep going and take everything in your stride”.

“Don’t let anyone say it can’t be done or that something isn’t meant to be. If you want to get involved and help with the caring, do it as long as it’s safe to do so,” she said.

“Don’t shut down and don’t block them out as you will miss out on some of the most amazing things.”

“Family is more important than anything, especially when tomorrow isn’t guaranteed,” she added.