Alayne Drowley has been admitted to hospital 64 times over the past seven years for a total of 885 days “give or take a few” her father says.
That equates to around two-and-a-half years spent in a hospital – a distressing enough time for anyone, let alone a young girl and her family who still haven’t been given a clear indication of what’s wrong with her.
Alayne even turned 18 while in Westmead Children’s Hospital’s Intensive Care Unit in May this year.
Because of that, she has now been transitioned into the adult hospital system through both the South East Regional Hospital and now Royal Prince Alfred in Sydney.
Her diagnosis, to the best of anyone’s knowledge so far, is “total intestinal failure”. It means Alayne’s nerves are dying right throughout her digestive tract. In April this year she had her colon removed in an 11.5-hour operation.
But father Trevor said she has also survived three separate bouts of septic shock and is displaying post traumatic symptoms so there are also possible neurological elements to her condition.
A silver lining is the doctor now in charge of Alayne at RPA specifically deals with intestinal failures, so Mr Drowley said that because “she now ‘fits’ somewhere” it was encouraging and they remain hopeful.
However, he said the transition process has been “daunting”. “Any child transitioning to the adult system is a significant issue,” Mr Drowley said this week from Alayne’s hospital bedside.
”We knew our way around Westmead. But with an opportunity for fresh eyes on Alayne’s medical situation we’re hopeful.”
Also weighing heavily on the Drowleys’ minds is the extraordinary costs associated with Alayne’s hospital stays – in particular, accommodation for the family who can no longer spend nights beside her as they could at Westmead.
“In the last 10 weeks we’ve spent around $8-10,000 in accommodation alone,” Mr Drowley said. “With RPA there’s no subsidised costs so in the middle of Sydney we’re hotel hopping. The one we’re in at the moment was only able to be booked until tomorrow so we don’t even know what’s beyond that.”
While a Facebook page, Angels for Alayne, has been running for several years sharing her story with the world, Alayne’s siblings have now also launched a GoFundMe account to assist with the family’s ongoing costs.
If anyone wishes to support the Drowley family, head to gofundme.com/angels-for-alayne