For the love of Lachie

What do you do when your child has a rare bleeding disorder? UQ’s Charles Eddy shares his family’s journey as they try to raise awareness of haemophilia.

University of Queensland administrative assistant Charles Eddy has already drawn a line through a few of son Lachie’s career possibilities.

He’s not doing so because of a defeatist attitude.
Rather, it’s because Lachie is among the approximately 2600 people in Australia living with haemophilia.

"He’s not going to be a rugby front-row forward or a rally car driver"

Haemophilia is a rare genetic bleeding disorder in which the blood does not clot properly due to missing or low levels of clotting factors.

“One of the major misconceptions is that the biggest danger is, if someone with haemophilia cuts themselves, they will bleed to death,” Charles says.

“This is still an issue and they can certainly bleed for longer, but most bleeding occurs internally, into muscles or joints.”

When Charles and his wife Shannon, who is a symptomatic carrier of the disorder, found out they were having a boy, they knew there was a 50% chance he would have haemophilia.

Lachie was born with nine per cent clotting factor VIII, which places him in the mild haemophilia range, a diagnosis that should have been manageable.

Now having just had his second birthday, the youngest of the Eddy family has already survived several life threatening health scares and endured more needles than many adults ever have to experience.

In an interview with The Inverell Times, the newspaper of his hometown, Charles told of one particular morning when his son vomited up a large chunk of blood.

“We rushed him to emergency,” Charles told reporter Carolyn Millet.

“He had to have two blood transfusions…he was pretty close to gone. He was so little and kind of chubby that they couldn’t get a line in. They blew more than 16 veins trying.

“In the end they had to drill through to the bone marrow in his leg and put a port in there to get blood into him.”

As if that episode was not distressing enough, the cause of Lachie’s internal bleeding was never fully identified, leaving a mystery that remains today.

Charles believes there is likely a slow bleed still unhealed inside his son, which to a child without a bleeding disorder wouldn’t be as serious.

“He’s not going to be a rugby front-row forward or a rally car driver.”
Every medical appointment and procedure is approached with trepidation, but also the knowledge that doing nothing will have even more threatening consequences.

The family history has meant that there is a certain knowledge of the condition passed between generations and while that helps on one level, nothing ever limits the anguish at decisive moments when calculated risks need to be taken.

“As soon as we discovered we were having a boy we went from being seen by the GP to a specialist,” Charles says.

“When it came time for the delivery they couldn’t use forceps or conduct an assisted delivery.

“Then, if they had to perform a caesarean, there would have been a risk for Shannon.

“We spoke to a lot of people and read a lot of research before Lachie even came into the world.”

That learning process is ongoing for the Eddy family and they are now determined to raise awareness in the wider community, so more people can be educated about the condition and hopefully contribute to finding better treatments and maybe even a cure.

Aside from his work at UQ, Charles has also been studying a Bachelor of Communications, majoring in journalism and creative media.

“Watching Lachie go through this ordeal has been pretty traumatic and we don’t want other people to go through this.

Charles and his wife put their heads together to figure out not only a way to help Lachie, but also everyone affected by bleeding disorders. They decided to get as much information as they could and invite the public along for the ride by making a documentary of their experiences, and in turn helping raise awareness.

“We started a GoFundMe account to get the ball rolling and we’ve had some great press so far which has been amazing,” Charles said.

“We had 25,000 online views for a story which Network 10 ran which is just fantastic exposure.”

The documentary is in now production and Charles and his family have been lucky enough to be able to travel to North America for interviews with representatives from some key haemophilia organisations.

Interviews have been filmed with World Federation of Hemophilia and Canadian Haemophilia Society in Montreal, the National Hemophilia Foundation in New York City, Hemophilia Foundation of Southern California in Los Angeles and Hemophilia Federation of America in Washington DC.

There are still interviews to be conducted in Australia with Lachie’s haematologist at Lady Cilento Children’s Hospital, the Haemophilia Foundation of Queensland and Australia as well as other families impacted by haemophilia to see what issues they feel are important to the haemophilia community.

“The key message we have taken away from our interviews so far is that there are so many people globally affected by bleeding disorders that aren’t properly diagnosed, and worse don’t even have access to treatment,” Charles said.

“We’ve realised that we can’t just do this to help Lachie and others in Australia, but we have to make a difference for all these people.”

At the moment Lachie’s condition has remained relatively stable thanks to medication that helps blood clots stay formed and they are now playing a waiting game, hoping that things remain under control while pushing ahead with the documentary.

To assist the Eddy family with helping to raise awareness about haemophilia, please visit gofundme.com/bleedinglovefilm or bleedinglove.org