Four year old Amesbury girl with chronic lung disease fronts Julia's House Christmas campaign
Isabella Chan requires round-the-clock care
Little Isabella Chan from Amesbury was just six months old when doctors discovered she had a rare condition that causes chronic lung disease.
Isabella, now 4, requires oxygen 24 hours a day to help her breathe.
She can't eat and has feeds and water hourly through a tube in her tummy.
The oxygen cylinders that Isabella needs are so heavy her mum, Erica, can't carry around more than one at time.
This means the star of the Julia’s House Christmas campaign 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 excited children.
“My Christmas wish would be that we can reduce Isabella’s oxygen soon,” says Erica. “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.”
Single Mum Erica has been supported by Julia’s House since Isabella was first born. Thanks to public donations, the children’s hospice charity cares for the most seriously ill children and their families across Wiltshire. Their specialist nurses and carers provide free respite support, clinical care and end of life support in the family home and at their Devizes hospice.
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,” says 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 says she can relax when Julia's House steps in
“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.”
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Making every moment count
This Christmas season, Julia’s House will continue to be there for families like Erica’s
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”
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
It is only thanks to the generosity of the community that Julia’s House can 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 vital care would not be possible.
You can donate and find out more about the charity here: www.juliashouse.org/Isabella