What it’s Really Like to Have a Brother with a Life-Limiting Condition

As Acorns Children’s Hospice celebrates the 20th anniversary of its sibling support group, Birmingham’s George Burns reveals how the charity has helped his family and what it’s really like having a brother or sister with a life limiting condition.

Like most boys his age, nine-year-old George Burns loves rollercoasters, football and having fun. His mum Fiona is a full-time carer and dad Chris is manufacturing services engineer. But what makes George’s family so special is younger brother Harry.

Harry has cerebral palsy. He is unable to talk, walk or sit without support.

George understands much of his brother’s condition and what that means for the future.

He explains: “Harry was born with cerebral palsy. He has brain damage. His disability means he can’t talk or walk, so we communicate with other ways like sign language.”

Like many loving big brothers, George enjoys spending time with eight-year-old Harry.

“I like to play with Harry. He’s just fun. He gets hyper and really excited. He can be cranky, but he’s fun. Sometimes I’ll play toys with him and he’ll find it really funny, so he starts to laugh. And spinning round in his chair, he finds that really funny.”

There’s the same sibling rivalry too.

“My brother sleeps in this bed and it’s got six-foot long pillows and I’m really jealous, I really want one,” says the Year 5 youngster.

“He’s got this Eyegaze thing,” George adds. “It’s like a massive iPad really but you control the mouse with your eyes and it helps him develop and tells us what he wants. He uses it to turn the channel over. When I’m trying to watch my shows, he’ll turn it over to his shows. So, it’s like this war going on to see who gets to watch their show.”

And like his big brother, Harry also attends school, a special needs school in Birmingham.

But there are times when having a sibling with a life limiting condition is different. Having a brother whose future is uncertain and who has frequent hospital visits can make life unpredictable.

“It’s been sad sometimes when he’s gone in for operations or I think he may die. It’s quite emotional,” explains Birmingham City Fan George.

“You don’t know what’s happening some days: one day we might have to call an ambulance, one day he might be fine, one day he might be cranky or upset. It’s all unexpected.”

It can also mean family plans, days out and trips can change or are cut short at the last minute.

“If we’ve got a plan and my brother’s unwell, we can’t go,” George says.

“It doesn’t always make it as fun for me when I’ve really looked forward to something and then we can’t go because my brother is unwell.

“Sometimes we’ll have to leave places if Harry gets upset, and I won’t get to stay as long as I want to.”

When Harry is unwell or having treatment, George is eager to help whenever possible.

“If my brother is being sick, I’ll run and get bibs and towels,” George explains. “If he’s doing physio, I’ll hold the iPad for him and I’ll do sign language with him.”

Harry’s condition gives George a unique view of the world. The youngster is already a fierce advocate for disability rights.

He says: “There are some places we can’t go to because of healthcare and it restricts us, and I think the world should have more opportunities for disabled people. There should be changing places, hoists. With how technology is there should be more for disabled people.”

George and his family are one of the hundreds across the region supported by Acorns Children’s Hospice.

The charity provides specialist palliative care for children and young people with life limiting and life threatening conditions, as well as support for their families.

In the past year, Acorns has cared for more than 870 children and 1,140 families in the West Midlands. Of those, 360 families live across Birmingham.

This year the charity is celebrating the 20th anniversary of its sibling support group – a group George has accessed for the last four years.

“Basically, what the sibling group is is all the people in my situation come together and get to play loads of silly games, get to do activities. It happens about once a month and it’s really fun and enjoyable.

“I’ve met other people like me, with a disabled brother. I’ve made friends here at the sibling group.

“We make stress balls, posters about what we’re good at. It helps me learn. Sometimes I’ll talk about Harry if I want to get things off my chest but mostly it’s about having fun.”

Harry has also benefited from Acorns services over the years, including hydrotherapy and short stays. Staff and volunteers at the Birmingham hospice are like family.

George says: “Acorns is really fun. It’s always been there for us. The staff are always very friendly. They’re nice, kind and caring. If I’m not feeling the best they’ll cheer me up. It’s not all just about my brother it can be about me.”

Acorns Children’s Hospice operates three hospices based in Birmingham, Walsall and Worcester.

The charity relies on donations and fundraising by the local community for 70 per cent of the £10million it needs to run its services each year.

To find out more about how you can support Acorns, visit www.acorns.org.uk

About Acorns Sibling Support Group

Acorns Sibling Support Group launched in 2009 with the aim of helping siblings adjust to being part of a family with a life limited or life threatened brother or sister.

With the support a team of dedicated trained volunteers, Acorns highly-skilled sibling workers currently help around 380 children and young people to face the challenges and the associated losses.

Through a range of activities and get togethers, the group enables siblings to gain a sense of involvement and belonging, reduce feelings of isolation and encourages these children to grown in confidence.

Support offered to siblings includes:

• One-to-one therapeutic sessions
• Group therapeutic sessions
• Specialist bereavement support
• Residential breaks
• Arts projects – music, pottery and puppetry for example
• Outings – cinema, theatre, sports venues, etc.
• A Sibling Council with council members providing valuable feedback on the service and future developments


Photo caption: George Burns and brother Harry receive support from Acorns Children’s Hospice.

For more information or for interview, photograph or filming opportunities, contact the PR and Communications team:

David Chamberlain: 01564 825020 / 07817 612422 / david.chamberlain@acorns.org.uk
Nicki Robinson: 01564 825062 / 07814 302153 / nicki.robinson@acorns.org.uk
Notes to editors:

Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.

  • Acorns is currently the UK and the world’s largest children’s hospice charity, as measured by the number of children it is helping to care for.
  • It costs £27,000 every day to run Acorns services providing care for children and support for their families. The charity relies heavily on donations to fund the majority of its activities.
  • To find out more about Acorns, please visit acorns.org.uk