Tiarney Cleary’s days should be filled with nonchalance and sweet oblivion.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
And mostly they are.
But between the obligatory fights with her brother Max and jumping barefoot on the trampoline, Tiarney, 4, spends half an hour each day walking around with her eyes closed.
This she does in preparation for the day she will go blind.
“How do you explain to a little girl that her world is going to be dark?” Tiarney’s mother, Gillian Cleary, said.
“This just isn’t right. We have conversations about it and we talk to her about it, but she doesn’t get it.
“I get her to walk around with her eyes closed for half an hour and see how it feels or I get her to smell things and encourage her to listen more clearly, but I don’t know how much she takes in.”
Tiarney, Max, and father Steven are all suffers of the same genetic fate known as neurofibromatosis.
Referred to as a number of inherited conditions, neurofibromatosis causes tissue along the nerves to grow uncontrollably.
It can cause pain, severe nerve damage, and loss of function in the area served by the nerve.
For Max and Steven, the condition has manifested externally, with Max, 6, baring cafe-au-lait spots – the hallmark symptom of neurofibromatosis – over his body.
But Tiarney’s case is, unfortunately, another story.
“Unlike Steve and Max, Tiarney’s condition is internal and she has developed bilateral tumours behind her eyes that are attached to the optic nerve,” Gillian said.
“And once the tumours merge, Tiarney will go blind.
“This, unfortunately, is inevitable.”
The young Thornton girl also has a third tumour in the middle of her brain which is malignant.
“This one also has the possibility to extend into her brain stem and travel towards her spinal cord. It could even make its way towards the pituitary gland which can cause early onset on puberty,” Gillian said.
Tiarney undergoes an MRI scan every three months to monitor the tumour and to see if the chemotherapy is working.
“We want the tumour to start shrinking and if it is, then that’s all well and good, but if not then more radical treatment will be required,” Gillian said.
Max was diagnosed with neurofibromatosis when he was six months old while Tiarney was diagnosed at nine months.
“We have lived with this for a while, but we only found out about eight months ago about Tiarney’s third tumour so things have really escalated and the tumour has tripled in size,” Gillian said.
“She is already starting to lose some of her sight. She falls over a lot more now and eventually she will go blind, there is just no preventing that.
“The other tumours haven’t grown in the past four months, which is a good thing because they can stagnate, but there is a chance they will kick off again in puberty.
“But unfortunately Tiarney’s case has proven to be a bit different to everybody else, so we don’t know what to expect or when. But she will lose her sight within five to 10 years.”
For now, the Cleary family just try to take each day at a time.
“Tiarney’s condition is for life because the tumour is solid and it’s inoperable because of where it is so all in all it’s been a nightmare of a year,” Gillian said. “But we’ll get through this somehow.”
The Beresfield Community Children’s Education Centre is hosting trivia night for Tiarney at the Pat Hughes Community Hall, Thornton, on Saturday, November 29, starting at 6.30pm. For more information email Megan.LYNCH3@det.nsw.edu.au