THE FAMILY of a little boy with a rare disorder are calling on the community to help support his long medical journey ahead.
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Henley Carey is a one year old from Coolamon, and in March this year, was diagnosed with a rare genetic disorder called Mucopolysaccharidosis, or MPS, which affects his major organs, bones and connective tissues.
After months of testing and visits to doctors and specialists, Henley was finally diagnosed at the Westmead Children's hospital in Sydney, which he now has to visit once a week to receive life saving enzyme replacement therapy.
"It is extremely hard, both myself and my husband work still and we have Henley's three-year-old brother, Darcy, to look after too," mum Alicia said.
The five hour trip from home has taken its toll on the Carey family and little Henley, but the challenge is about to grow even harder as he prepares for a new type of treatment.
In the next few weeks, Henley will begin an aggressive chemotherapy treatment as well as receiving a bone marrow transplant taken from his brother, Darcy.
"It is about to get a lot tougher to manage, one of us will be up here [in Sydney] with Henley all the time and also taking care of Darcy because he will have some recovery as the donor too," Mrs Carey said.
"Darcy is still so young so he doesn't really understand just how much he's helping his little brother, he sees that Henley has a permanent catheter which comes out of his chest so he just thinks his brother has a cut but doesn't really know why."
Following the transplant and chemotherapy, Henley will be kept in an isolated room in the hospital's oncology ward for three or more months due to the treatment making him severely immunosuppressed. He will also have to remain in Sydney for about six months to monitor any complications that may arise, and will continue to require weekly visits to Westmead Hospital beyond that.
Mrs Carey is a full time lecturer at Wagga's Charles Sturt University, as well as nursing casually at Wagga Base Hospital.
"It's getting harder to juggle, and my husband also works as a tradesman too but I am trying to save up as much leave as I can in order to be able to take those six months off to care for Henley in Sydney," she said.
The family have set up a GoFundMe page which has already raised about $7000 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 - 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.
The family had one wish beyond the safe recovery of both Henley and Darcy.
"We just hope that we can all be home by Christmas," Mrs Carey said.
The family have also set up a bank account for those wishing to donate but who are hesitant to use the GoFundMe website.
The details are as follows:
- BSB: 484 799
- Account Number: 034 279 751