At just six months old, doctors discovered Isabella Chan had a rare condition that causes chronic lung disease. Mum, Erica, fears that if her condition worsens “there may not be a lot more they can do” for the smiley youngster.
Erica said: “Isabella spent her first Christmas in hospital. 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.”
Although Isabella is now able to live at home with her mum, she requires 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, to help her breathe – even when she plays and sleeps.
Sadly, Isabella has never been able to visit Father Christmas in his grotto, as the oxygen cylinders she needs are so heavy, Erica can only carry one at a time, and she is terrified the oxygen will run out while they are waiting.
Erica said: “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.”
Erica copes with support from Julia’s House and Isabella is heading up their Christmas campaign. The charity cares for the most seriously ill children and their families across Dorset and Wiltshire and relies heavily on public donations to continue its work.
Harriet Baulu, Julia’s House nurse associate, regularly visits the family at their home to care for Isabella’s medical needs and play with her safely.
Harriet said: “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. 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.”
Harriet added: “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.”
Donate and find out more about Erica and Isabella’s story at www.juliashouse.org/Isabella
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