BRAVE BENTLEY NEEDS YOUR HELP
LITTLE Bentley McNeal is a fighter.
Having endured more health struggles than mum Rachel can count, Bentley, 9, was born with an incredible rare and often fatal heart condition and had open heart surgery as a tiny 1.8kg newborn.
Unfortunately, Bentley’s previous health woes were just a warm up to what was yet to come.
“Twelve months ago Bentley’s health began to deteriorate again, slowly at first but then has accelerated over the past four months. Bentley also has autism, anxiety disorder, SLI (specific language impairment) and just last week, after another round of invasive procedures, now has a literal list of diagnosis to do with his trachea and lungs,” Rachel said.
“Bentley went into early stages of organ failure, is sometimes unable to even walk short distances without severe shortness of breath and even struggles to eat or drink without extreme loss of energy. Our poor boy has not been to school since term 1, which is heartbreaking to see him miss his friends so much.
“We’ve just received a longawaited tentative diagnosis. Bentley has tracheomalacia — which means his trachea will sporadically collapse or go ‘floppy’ as described by his surgeon — and bronchiectasis. All the little holes in his airways become blocked from mucous ect and create infection, which Bentley cannot cough up or clear.
“Mild pulmonary hypertension — the oxygen veins from his heart to lungs are under too much pressure, and structural abnormalities impairing breathing, eating and speech.”
The McNeals are actively seeking donations to help make Bentley’s life a little more bearable.
“Unfortunately, due to Bentley’s age and other health concerns, there is no surgical option and we’re faced only with options to manage symptoms in an attempt to provide our boy with somewhat quality of life, and dare I say it, a childhood.
“Bentley’s day-to-day life is pretty lonely. If we aren’t at an appointment or in hospital he is at home.
“Any small infection could spell disaster, even a trip to the grocery store is avoided.
“When he has a ‘good day’ he will build Lego or we will encourage him to lay outside in the sun for some fresh air and guess the cloud shapes.”
Mrs McNeal said any money raised would go towards counselling for the whole family as well as purchasing much-needed medical supplie.
To donate, visit https:// www.gofundme.com/bentley039s-health-fund.
ANY SMALL INFECTION COULD SPELL DISASTER, EVEN A TRIP TO THE GROCERY STORE IS AVOIDED
MUM RACHEL McNEAL