Mum Erica has shared her Christmas wish for her daughter Isabella to breathe with less oxygen support, in a special Christmas appeal for Julia’s House children's hospice.
Isabella Chan was just six months old when doctors discovered she had a rare condition that causes chronic lung disease. Now her mum Erica fears that if her condition worsens “there may not be a lot more they can do” for the smiley youngster.
“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.”
Four-year-old 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 and she’s constantly connected to an oxygen tank – even when she plays and sleeps – to help her breathe.
The oxygen cylinders that Isabella needs are so heavy that mum Erica can’t carry around more than one at a time. This means the star of our Christmas appeal 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, we care for the most seriously ill children and their families across Wiltshire and Dorset. Our specialist nurses and carers provide free respite support, clinical care and end of life support in the family home and at our hospices in Devizes and Corfe Mullen.
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 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 be there for families like Erica’s, helping them to make every moment count.
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 we can provide our lifeline of care for the growing number of seriously ill children and their families in Wiltshire and Dorset. Without continued support, our vital care would not be possible.
