Since January, the former Inverell man and his wife Shannon Gracey have been battling to find answers to their son Lachie’s health scares.

Seventeen-month-old Lachie was born with a manageable form of haemophilia but has been suffering unexplained internal bleeding that has almost taken his life.

And even through the trauma of watching his toddler suffering through acute illness and painful emergency treatments, Charles has been working towards increasing awareness and understanding of haemophilia.

Charles and Shannon, who live in Brisbane, knew there was a chance a son could be born with the disorder. There is a family history on her side, and she is a symptomatic carrier who needs occasional treatment.

They tried for a girl but conceived a boy.

“When we had the chance to find out the gender … as soon as she said, ‘It’s a boy’ we both cried a little bit and got a lot of judgment from the nurse because she didn’t really understand,” Charles says. 

But they were still positive about their child’s future. Lachie turned out to be “a vibrant, lovely kid” and, like Shannon’s haemophiliac family members, his condition was mild (Lachie has 9 per cent factor VIII) and they had an idea of how it would affect his day-to-day life.

However, any predictability went out the window towards the end of January, when Shannon found dark blood in Lachie’s poo.

Investigations over a couple of emergency department visits didn’t find anything and they were sent home each time. The little boy deteriorated rapidly, with bloody vomits and poos.

“One morning he threw up a big chunk of clotted blood and a lot more, so we rushed him to emergency,” Charles says. “He had to have two blood transfusions … he was pretty close to gone.”

Apart from the blood loss, there was also trouble treating Lachie with the required synthetic clotting factor.

“He’s so little and kind of chubby, and they couldn’t get a line in. They blew 16 veins trying to get a line in … they had to drill through to the bone marrow in his leg and put a port in there,” Charles says.

“He spent the night in ICU, got stabilised and then had a few days in hospital with ongoing bleeding.

“But we can’t find the cause of it. He’s had a couple of scopes and a whole bunch of tests, but they can’t really figure out where it’s coming from. 

“In all likelihood, there’s probably a slow bleed in there somewhere that, with a normal person, wouldn’t affect them as much … something that’s probably complicated by haemophilia.”

Since then, Lachie’s been back to emergency about half a dozen times. Gastroenterological issues are looking unlikely and doctors are now investigating possible dermatological (skin) or rheumatological (autoimmune) causes.

“He’s had well, well, well over 50 needles – and that’s being conservative – since January, and he’s stable at the moment, but it’s all still an unknown,” Charles says.

Charles says all their research and experiences have convinced them there needs to be greater awareness of and funding for the disorder in Australia. Most breakthroughs are largely coming out of Canada and the United States.

This big picture filters down to this little family’s everyday life in unexpected ways.

“Another real issue we’re trying to fix is that [in Queenland, for example] there’s only two haemophilia treatment centres – Lady Cilento and Royal Brisbane – they’re the only two places that stock the factor. It’s a very expensive drug and they don’t have it at every hospital,” Charles says.

“We can’t think about coming home to Inverell to visit, because it’s not available there and if something terrible happens, the wait may be too long.

“If the drug was less expensive, it could be stocked in more places.”

Charles works in student administration at the University of Queensland, and has almost completed an external bachelor of communications. He’s studying journalism and creative media, with a view to entering film-making, and is now putting it to crucial use.

“We feel that the biggest stumbling block is awareness. We thought, we could raise some short-term funds and that might create an impact for short amount of time, but we wanted to do something that would do a bit more in awareness … creating something to be seen by a lot of people.”

Charles has secured permission from Lachie’s treatment centre to do some filming and interviews, and he’s been talking with some other affected families about taking part.

Charles and Shannon also plan to visit the headquarters of the World Federation of Hemophilia in Canada and the Hemophilia Federation of America in Washington DC, to document research, developments and other programs in haemophilia treatment, care and fundraising.

He has sent up a gofundme account to help him make his documentary “of high enough quality and enough substance that it will reach a global audience”.

“The bulk of it will be for production … we want to have enough left over to make a good donation to the Haemophilia Foundation once this is all done, as well.”

Charles acknowledges it’s going to be intrusive and emotionally painful to document his son’s suffering, but “rattling off facts about haemophilia and facts about research [is] not going to be interesting to anybody”.

“The horrible stuff that Lachie has gone through, as hard as it has been, is a good frame to tell the story,” he says.

“We’ve ultimately decided we want as many people to see this as possible, and they’re going to see footage of Lachie and we’ll have to show photos of what he’s been through.

“Yes, it is a concern, but it’s one we have to put aside for the greater good … yes, it’s been a frigging horrible experience, but ultimately we want to make it into a positive and help him and other kids in the future.”