Meet Bella Brown
Bella was only hours old when her parents, Charlotte and Joel Brown, knew something was wrong. Not only did their newborn girl have a heart murmur, but she had started to leak milk from her nose.
A month later, Charlotte found her daughter unresponsive and blue – baby Bella was choking on blocked airways. Bella saw a doctor and was discharged.
When Bella failed to gain weight, and meet milestones, Bella’s parents were confident something was wrong.
“I have four children; I wasn’t a first-time mum. I knew something wasn’t right,
” Charlotte said.
At 16 months of age, Bella was officially diagnosed with DiGeorge syndrome, a disorder that results in poor development of several bodily systems. Each case varies, and Bella faces a raft of difficulties, including being globally developmentally delayed and nonverbal, she has a low immune system and doesn’t respond appropriate to immunisation. She als has Bernard Soulier syndrome which causes her to bleed more profusely from wounds and her blood levels drop very easily.
“Having diagnosis was really relieving, because we always knew something wasn’t right. Although, it was upsetting to know she had something that would affect her whole life.”
Bella’s future is uncertain – a symptom of her genetic illness causes Velopharyngeal insufficiency (VPI
) which causes structurally-based speech problems, and she’s currently attending weekly speech therapy classes to combat that, as well as learning sign language. She is unable to attend day care as she can get sick very easily with her weakened immune system and her heart issues are ongoing. Schooling will depend on the progress of her development.
Despite her diagnosis, Bella has a sunny personality. Her mum says she loves posing in photographs and meeting new people.
While a common genetic disease, there is no cure; only treatment. Charlotte and her husband, Joel, are effectively carers for the daughter.
“Bella loves her siblings, the best time of the day is when they come home from school. And her siblings, Ameliah, Lucas and Connor, are so great with her. Her brothers are very protective and they want to raise awareness about her condition.