An Amesbury mum has shared her Christmas wish for her daughter to breathe with less oxygen support.

Isabella, aged four, has never been able to visit a Santa’s Grotto because her mum is terrified that the oxygen she relies on may not last long enough for her to queue with all the other children.

Single Mum Erica has been supported by Julia’s House since Isabella was first born, and has shared her story in a special Christmas appeal for Julia’s House Hospice

The children’s hospice charity cares for the most seriously ill children and their families across Wiltshire providing free respite support, clinical care and end of life support in the family’s own home and at their Devizes hospice.

Isabella and Erica's story 

Isabella Chan was just six months old when doctors discovered she had a rare condition that causes chronic lung disease and her mum, Erica, fears that if her condition worsens “there may not be a lot more they can do”. 

“Isabella spent her first Christmas in hospital,” said Erica. 

“For the whole of her first year, she was moved to and from Southampton and Salisbury hospitals while they did tests. 

"There was quite a lot of time that I couldn’t be with her, which was very hard because I didn’t know how long it would ever be until I could take her home.”

Isabella is now able to live at home with her mum in Amesbury, but she needs round-the-clock care for her complex condition.

She can’t eat so she feeds and has water hourly through a tube in her tummy. 

She is also constantly connected to an oxygen tank to help her breathe – even when she plays and sleeps – and the oxygen cylinders are so heavy that her mum can’t carry more than one at a time. 

Erica added: “My Christmas wish would be that we can reduce Isabella’s oxygen soon.

“She is on the maximum she can be on at home. 

“It means if she became ill, or if her breathing worsened, she would have to be admitted to the hospital and there may not be a lot more they can do for Isabella. 

“There is the potential to go on the transplant list for new lungs, but it’s something I find very difficult to think about - Isabella suffering or struggling to fight for her next day.”

A lifeline of support

Julia’s House Nurse Associate, Harriet Baulu, regularly visits the family at their home to care for Isabella’s medical needs and play with her safely.

“It’s lovely to see Isabella’s smiling face beaming out at me from her window when I arrive – I love to play with her and make her giggle,” said Harriet.

“When I come, I can also see how relieved Mum Erica is to have someone there to share her thoughts with. Looking after a child with extremely complex needs, day-in day-out, can be very isolating – not to mention physically and emotionally exhausting.”

Erica said: “The only break I ever get is from Julia’s House – they are always there if I need them.

"And when Isabella is with her Julia’s House nurses and carers, I don’t have to worry about what will happen if she unplugs herself by accident or when she needs to be tube fed.

"They’re not scared to look after her like other people would be. They can take her to parks and weave her through climbing frames so that she doesn’t get her oxygen tube tangled. She may have lung disease but I still want her to go out and have fun.”

Making every moment count

This Christmas season, Julia’s House will continue to support families like Erica’s at a time which can be hard for parents with children needing complex care.

Harriet said: “Every child and family should have the opportunity to enjoy a magical Christmas. But for many of the families we support, this time of year can be a reminder of difficult times and the experiences their child has missed out on because of their condition.

“We can’t give our families the Christmas wish they really want – for their seriously ill child to get better – but we can help them to make memories they can treasure for the years to come,” said Harriet.

She added: “For the bereaved families that we support, we can also be there to simply sit with them, or go for a walk and talk about the child that they so dreadfully miss – something that even close family and friends find hard to do with them.”

Help local families this Christmas

Julia’s House relies on the community to provide its lifeline of care for the growing number of seriously ill children and their families in Wiltshire.

Each year, the charity needs to raise £1.5million to fund its hospice and community-based service across the county, and without continued support, the charity’s care would not be possible. 

To donate and find out more about Erica and Isabella’s story visit:


Get more Salisbury news

You can also like our Facebook page and follow us on Twitter and Instagram to stay up to date, as well as signing up for one of our newsletters.

If you want online news with fewer ads, unlimited access and reader rewards - plus a chance to support our local journalism - find out more about registering or a digital subscription.

Email with your comments, pictures, letters and news stories.