This month beautiful Bella turned five, but it hasn’t been an easy road for the resilient Sunshine Coast youngster.
Bella was born with a rare genetic disorder called 22q11.2 deletion syndrome which means Bella is missing a piece of a chromosome.
“Being our fourth baby, my husband and I knew from birth something wasn’t right,” mum Charlotte Brown said.
“She had issues with feeding at birth… She suffered a blocked airway at six weeks old and stopped breathing which was pretty terrifying. And she didn’t meet those major milestones like our other children.”
It wasn’t until Bella was 16 months old that she was formally diagnosed with the syndrome.
“It was a relief to get the diagnosis so we could get the right doctors involved because early intervention is so important, but it was upsetting knowing it was going to affect her whole life.
“Bella is developmentally delayed, she’s behind in her speech, growth and fine motor skills. Just walking at the shops is hard, but she is doing well, she has good days and bad days.”
The cheeky pre-schooler is no stranger to the wards of the Sunshine Coast University Hospital (SCUH) and often travels to Brisbane to see her 12 medical specialists which includes her cardiologist, haematologist, speech therapist and gastroenterology doctor.
“I used to run my own business from home but I have given that up to look after Bella, and we travel a lot to Brisbane because a lot of her specialists don’t come up here to SCUH.”
The Brown family have been big supporters of this year’s 92.7 Mix FM Give Me 5 For Kids appeal which is raising funds for Family Accommodation close to SCUH to keep families together during critical times of need.
Bella’s dad Joel manages the Coolum Woolworths store and has donated hundreds of dollars worth of baked goods for the recent GM5FK Teddy Bears Picnic and this Sunday’s Jessie’s Party at Fraser Park to help raise funds for the cause close to his heart.
“Obviously, there are a lot of hospital stays which mean juggling all the other kids around too and that’s why Family Accommodation centres are so important near hospitals,” Mrs Brown added.
“It affects the whole family unit when someone is sick in hospital.
“Having somewhere where you can prepare a meal or do washing takes a little bit of financial stress out of it as well because you’re not having to rely on takeaway. It means you can still be together when someone is sick.”
Make a difference today. Donate to 92.7 Mix FM’s Give Me 5 For Kids – visit www.giving.wishlist.org.au/donate to make a tax-deductible donation.
Wishlist is a not-for-profit organisation which directs funds to the needs of the Sunshine Coast Hospital and Health Service. Wishlist is the grateful beneficiary of 92.7 Mix FM’s Give Me 5 For Kids appeal.