The Julia's House charity has launched its Christmas appeal with the help of a three-year-old girl called Isla Goodenough.
Isla practising sitting up
This Christmas, Isla’s family are holding their breath for a miracle – that they can celebrate all together at home.
The Wiltshire family are sharing their story for this year’s Julia’s House Christmas Appeal, in the hope that it will raise awareness and vital donations for the children’s hospice charity, which is currently facing financial difficulties, and help more local families like theirs.
Mum Georgia said: “Until it’s Christmas morning and we’re all together unwrapping presents under the tree, I won’t believe that it’s going to happen.” Born at just 24 weeks, Isla has brain damage and lung disease, and she has spent much of her life in hospital.
She came into the world fighting for life and has been fighting ever since – defying the odds to reach new childhood milestones.
Isla’s family know her life may be short, but she continues to surprise them with her strength and makes them laugh with her cheeky character. This year, Isla said her very first word.
Georgia said: "She called out to me and said, 'Mama.' I just cried. She says it all the time now. It’s so lovely."
Cheered on by big sister Darcey, Isla has started to take her first steps in her walker.
Isla’s family are now hoping that a recent brain operation will help to prevent the build-up of dangerously high fluid levels, which could un-do all the precious skills Isla’s learned and would be devastating after all the progress she’s made.
Isla’s family is supported by Julia’s House Children’s Hospice.
The charity provides critical and compassionate care to families of the most seriously ill children across the county, from Swindon to Salisbury.
This essential service is only possible thanks to donations from the local community – just eight per cent of the charity’s funding comes from the Government.
Following a challenging fundraising period and an increase in costs, the charity has announced that it may need to consider restricting services if it can’t raise more funds over the coming months.
Julia’s House Chief Executive Martin Edwards said: “I’m always humbled by the kind donations that we receive from people who want to help the increasing number of children and families who depend on us.
“The rising cost of living has affected us all, and for Julia’s House it has significantly increased the cost of our care.
“We are facing one of our hardest hitting periods financially, since we first opened our doors in Wiltshire seven years ago, with an estimated £1m budget deficit, and the major blow of having to find £242,000 to cover the recent National Insurance increase announced by the Government.
“We are campaigning hard to improve Government funding, but we will always need the amazing support of our local community to help families, like Isla’s, who are caring round-the-clock for their very seriously ill child.”
Isla’s mum, Georgia, said: "When Isla was born, she was so tiny, she fitted into her dad James’ palm. She weighed just 517 grams and was 28cm long – smaller than a little ruler.”
As a result, Isla has developed lung disease and has brain damage. She needs to be constantly attached to a heavy oxygen tank, which is carried everywhere she goes, and she is fed through a tube in her tummy.
“Caring for Isla is relentless,” said Georgia. “You can’t leave her at any point, you’ve always got to have your eyes on her because she can be a pickle and pull on her oxygen tube or suddenly get really poorly.”
At nine months old, Isla needed heart surgery, and just after her first birthday, she suffered a major cardiac arrest. It was a huge scare for Georgia and James – they were so worried they were going to lose her.
“We were in and out of intensive care for months and Isla spent the whole of her first year in hospital including her birthday and her first Christmas too,” said Georgia.
“Her sister Darcey was just two years old then. We were trying to create all the Christmas magic for her at home in the morning, before dashing over to see Isla in hospital. It was a really stressful, horrible time.”
Fortunately, Isla pulled through and was well enough to finally go home, but life has continued to feel like an unpredictable roller coaster for her family.
“From the very beginning, I’ve taken photos of Isla holding my hand,” said Georgia. “She started out with such tiny little fingers; it shows how much she’s grown and how well she’s doing.”
Isla’s Julia’s House Nurse, Amy Foster, said: “Families like Isla’s are put under tremendous pressure to care round-the-clock for their very seriously ill child. Without the help of Julia’s House, they may have very little respite breaks and no support network around them.
“My hope for Isla’s family is for them to be able to spend quality time together, just like other families do at Christmas, and to see Isla continue to make progress. It’s lovely to know that we can help with that.”
Julia’s House provides free and regular care for Isla at her home near Calne and in the charity’s Devizes hospice, where she has ‘secret physio’ while she sits-up to look at the colourful bubble tube.
The charity's care includes complementary therapy for stress and muscle pain relief, social events where they can meet other families who can understand what life is like for them, plus special sibling support for Isla's four-year-old sister Darcey.
If a child sadly reaches the end of their life, Julia’s House continues to be there, to help give families their choice of compassionate care, whether that’s in the home, hospice or hospital. The charity’s nurses provide bereavement support for the family if they need this in the following years.
Georgia said: “Julia’s House is really important. While Isla’s with her Julia’s House nurses and carers – I get to live a non-carer's life, and I can be me for a couple of hours.
“It kind of re-sets you. You take a break, tick-off some jobs, and then you’re ready to start again.
“It can be hard to chat to people when you have a child with complex care needs – because you’re so fixated on whether your child has got their medicines, or they’ve got their feeds running.
“When we go to the Julia’s House events, it’s a lovely opportunity to meet other families who know what you’re going through.
"Even though their child’s condition is different, they still understand the strains and stresses that you have when you’re caring round the clock for your very poorly child.”
People can find out more about the appeal at www.juliashouse.org/ChristmasAppeal
The Wiltshire family are sharing their story for this year’s Julia’s House Christmas Appeal, in the hope that it will raise awareness and vital donations for the children’s hospice charity, which is currently facing financial difficulties, and help more local families like theirs.
Mum Georgia said: “Until it’s Christmas morning and we’re all together unwrapping presents under the tree, I won’t believe that it’s going to happen.” Born at just 24 weeks, Isla has brain damage and lung disease, and she has spent much of her life in hospital.
She came into the world fighting for life and has been fighting ever since – defying the odds to reach new childhood milestones.
Isla’s family know her life may be short, but she continues to surprise them with her strength and makes them laugh with her cheeky character. This year, Isla said her very first word.
Georgia said: "She called out to me and said, 'Mama.' I just cried. She says it all the time now. It’s so lovely."
Cheered on by big sister Darcey, Isla has started to take her first steps in her walker.
Isla’s family are now hoping that a recent brain operation will help to prevent the build-up of dangerously high fluid levels, which could un-do all the precious skills Isla’s learned and would be devastating after all the progress she’s made.
Isla’s family is supported by Julia’s House Children’s Hospice.
The charity provides critical and compassionate care to families of the most seriously ill children across the county, from Swindon to Salisbury.
This essential service is only possible thanks to donations from the local community – just eight per cent of the charity’s funding comes from the Government.
Following a challenging fundraising period and an increase in costs, the charity has announced that it may need to consider restricting services if it can’t raise more funds over the coming months.
Julia’s House Chief Executive Martin Edwards said: “I’m always humbled by the kind donations that we receive from people who want to help the increasing number of children and families who depend on us.
“The rising cost of living has affected us all, and for Julia’s House it has significantly increased the cost of our care.
“We are facing one of our hardest hitting periods financially, since we first opened our doors in Wiltshire seven years ago, with an estimated £1m budget deficit, and the major blow of having to find £242,000 to cover the recent National Insurance increase announced by the Government.
“We are campaigning hard to improve Government funding, but we will always need the amazing support of our local community to help families, like Isla’s, who are caring round-the-clock for their very seriously ill child.”
Isla’s mum, Georgia, said: "When Isla was born, she was so tiny, she fitted into her dad James’ palm. She weighed just 517 grams and was 28cm long – smaller than a little ruler.”
As a result, Isla has developed lung disease and has brain damage. She needs to be constantly attached to a heavy oxygen tank, which is carried everywhere she goes, and she is fed through a tube in her tummy.
“Caring for Isla is relentless,” said Georgia. “You can’t leave her at any point, you’ve always got to have your eyes on her because she can be a pickle and pull on her oxygen tube or suddenly get really poorly.”
At nine months old, Isla needed heart surgery, and just after her first birthday, she suffered a major cardiac arrest. It was a huge scare for Georgia and James – they were so worried they were going to lose her.
“We were in and out of intensive care for months and Isla spent the whole of her first year in hospital including her birthday and her first Christmas too,” said Georgia.
“Her sister Darcey was just two years old then. We were trying to create all the Christmas magic for her at home in the morning, before dashing over to see Isla in hospital. It was a really stressful, horrible time.”
Fortunately, Isla pulled through and was well enough to finally go home, but life has continued to feel like an unpredictable roller coaster for her family.
“From the very beginning, I’ve taken photos of Isla holding my hand,” said Georgia. “She started out with such tiny little fingers; it shows how much she’s grown and how well she’s doing.”
Isla’s Julia’s House Nurse, Amy Foster, said: “Families like Isla’s are put under tremendous pressure to care round-the-clock for their very seriously ill child. Without the help of Julia’s House, they may have very little respite breaks and no support network around them.
“My hope for Isla’s family is for them to be able to spend quality time together, just like other families do at Christmas, and to see Isla continue to make progress. It’s lovely to know that we can help with that.”
Julia’s House provides free and regular care for Isla at her home near Calne and in the charity’s Devizes hospice, where she has ‘secret physio’ while she sits-up to look at the colourful bubble tube.
The charity's care includes complementary therapy for stress and muscle pain relief, social events where they can meet other families who can understand what life is like for them, plus special sibling support for Isla's four-year-old sister Darcey.
If a child sadly reaches the end of their life, Julia’s House continues to be there, to help give families their choice of compassionate care, whether that’s in the home, hospice or hospital. The charity’s nurses provide bereavement support for the family if they need this in the following years.
Georgia said: “Julia’s House is really important. While Isla’s with her Julia’s House nurses and carers – I get to live a non-carer's life, and I can be me for a couple of hours.
“It kind of re-sets you. You take a break, tick-off some jobs, and then you’re ready to start again.
“It can be hard to chat to people when you have a child with complex care needs – because you’re so fixated on whether your child has got their medicines, or they’ve got their feeds running.
“When we go to the Julia’s House events, it’s a lovely opportunity to meet other families who know what you’re going through.
"Even though their child’s condition is different, they still understand the strains and stresses that you have when you’re caring round the clock for your very poorly child.”
People can find out more about the appeal at www.juliashouse.org/ChristmasAppeal
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