A young Riverina boy who has touched the hearts of people around the country is continuing his battle with a rare genetic disorder in a Sydney Hospital.
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One-year-old Henley Carey has been in Westmead Children's Hospital since early June undergoing treatment for Mucopolysaccharidosis, or MPS, a disorder which affects his major organs, bones and connective tissue.
Henley underwent 10 gruelling days of chemotherapy before having a lifesaving bone marrow transplant last week, using marrow donated by his three-year-old brother Darcy.
MPS is currently incurable, but a bone marrow transplant gives Henley the best possible chance at living a longer and happier life.
Darcy had surgery on Thursday morning to have his bone marrow harvested and save his little brother's life.
"That all went really well. He was up and out of hospital that afternoon," their mum Alicia said.
"And then Henley got the bone marrow transplant, an infusion, that evening."
Darcy was in the room when Henley had his bone marrow transplant and both boys are doing well.
"We have photos to show [Darcy] when he's older... We talk about it in a positive way and tell him that he's very special and has been able to help Henley," Mrs Carey said.
"He always says that Henley lives at the hospital."
The two brothers share a special bond and Mrs Carey said Henley "just lights up" whenever he sees Darcy.
In the next week Henley is expected to go onto continuous morphine infusions to help him cope with the painful side effects of chemotherapy.
"It's just the next three to four weeks which are really the hard weeks, his immunity will be at zero ... they get a lot of pain and his hair will fall out in a week or so," Mrs Carey said.
If all goes well, Henley could spend the next six months in hospital regaining his strength before he heads home to Coolamon.
His complex journey would then continue with a team of specialists and NDIS early intervention therapy to give him the best chance at living a fulfilling life.
With the bone marrow transplant, current research suggests he could live into his twenties.
"We're obviously hoping for something else to come along in that time," Mrs Carey said.
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Mrs Carey and her husband Sean have taken time off work and moved to a unit near the hospital so they can be closer to their son and one of them is always by Henley's side.
"It's hard. I mean, I don't know when I'll go home ... we'll just take it one day at a time and see what happens with Henley," Mrs Carey said.
After months of testing and visits to doctors and specialists, Henley was finally diagnosed with MPS in March.
It was then his mum and dad received the devastating news their baby would not live the kind of life that all parents wish for their children.
The family were initially commuting from Coolamon every week so Henley could receive enzyme replacement therapy.
They have set up a GoFundMe page which has now raised almost $35,000 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."
Mrs Carey said her family had seen incredible generosity from people they didn't know.
The family have 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