A LITTLE boy from Coolamon has endured a long journey in hospital, but last night his family were finally allowed to have him home.
One-year-old Henley Carey was born with Mucopolysaccharidosis, or MPS - a disorder which affects his major organs, bones and connective tissue.
Since Early June this year, Henley has been in Westmead Children's Hospital where he underwent 10 days of chemotherapy ahead of a lifesaving bone marrow transplant donated from his three-year-old brother Darcy.
While there is no cure for MPS yet, the bone marrow transplant will give little Henley the best chance at living a longer, happier life.
His mum Alicia Carey said the little fighter was finally allowed to leave the hospital yesterday.
"It's a little bit weird to all be back together, we are staying in our Sydney home too because we still need to be close by to the hospital," she said.
"He was up all night so we were all a bit worried, but I think he's just adjusting to being home too."
Mrs Carey said Henley spent 68 days in hospital during his latest visit.
"He had some complications which kind of prolonged the stay, he ended up going up to ICU three times, and every time that happened it felt like a big step back," she said.
"There was a period there where I just couldn't wait for him to smile again and to be happy, he had a rough time and we honestly didn't expect to have him home last night."
Friday was the first day in 68 days that Henley hadn't been connected to some form of IV medication, according to Mrs Carey.
"He was free to crawl around with his brother," she said.
"Darcy is so excited to have him home too, and Henley loves playing with Darcy so they're enjoying being back together."
Henley's fight isn't over, as he continues to go to hospital three days a week to monitor his weight and blood.
"He's on 11 medications at the moment so all those levels have to be checked regularly, and some of the drugs are being decreased," Mrs Carey said.
"He also has to stay in isolation until at least day 100 post bone marrow transplant, and we are currently on day 50-something so half way there.
"It's tough not being able to have family visit him, but this is the first milestone of his big treatment so we are really happy to get this far."
In other news:
The Carey family has set up a GoFundMe page which has now raised more than $37,000 for the cost of travel, treatment and living both in Sydney and Coolamon, as well as wage loss due to unpaid leave needed.
"While it is a huge weight off our shoulders to have that support, it's not really about the money," Mrs Carey said.
"We want to be able to raise awareness to the testing of MPS sooner because currently in Australia it is not part of newborn screening tests, meaning Henley's condition could have been picked up on a lot earlier."
The family has also set up a bank account for those wishing to donate but might be hesitant to use the GoFundMe website.
The details are as follows:
- BSB: 484 799
- Account Number: 034 279 751