Lachie Eddy wears a Little Legend shirt to raise awareness for people living with bleeding disorders. Picture: Charles Eddy
Lachie Eddy wears a Little Legend shirt to raise awareness for people living with bleeding disorders. Picture: Charles Eddy

My son was standing in his cot covered in blood

CHARLES Eddy and Shannon Gracey are urging people to be a Bloody Legend to raise awareness for people living with bleeding disorders.

The Brisbane North couple has launched their lighthearted campaign during National Bleeding Disorders Awareness Week (October 13-19).

They were inspired to raise the profile of bleeding disorders after their three-year-old son Lachie battled a life-threatening stomach bleed when he was one.

Charles Eddy shares their story:

 

Charles Eddy and Shannon Gracey with their children Lachie and Flynn. Picture: Charles Eddy
Charles Eddy and Shannon Gracey with their children Lachie and Flynn. Picture: Charles Eddy

Lachie has haemophilia, a rare genetic bleeding disorder where a person's blood doesn't clot properly. We thought it would be pretty manageable, but the thing with rare conditions like bleeding disorders is they can be very unpredictable.

We knew we would have to be careful with him and make sure he doesn't get into situations where he could be injured.

Bumps and bruises would be monitored closely, and we would need to always be prepared for an emergency dash to the hospital, especially with anything involving the head.

Severe internal bleeding is a whole different situation that we certainly weren't prepared for.

Just after Lachie turned one he had a spontaneous gastrointestinal bleed.

He was cradled in his mother's arms, covered in blood in the back of an ambulance making a desperate dash to the children's hospital. I was sitting in the front, unable to see, but I could hear him continuing to vomit up blood.

 

Lachie was covered in blood in his cot after a pill camera was inserted into his body. Picture: Charles Eddy
Lachie was covered in blood in his cot after a pill camera was inserted into his body. Picture: Charles Eddy

 

Lachie in hospital. Picture: Charles Eddy
Lachie in hospital. Picture: Charles Eddy

 

He'd had some close calls in the past but I honestly thought he might not make it.

He was fighting for his life on an emergency room bed. All we could do was stand and watch as the emergency staff desperately tried to keep him alive.

His veins were completely flat from blood loss, which made giving him life saving clotting factor and blood transfusions to revive him almost impossible.

Lachie finally made it through this horrendous ordeal after the doctors made the tough decision to drill into his shin and transfuse the blood directly into his bone marrow.

Lachie still needed his factor to help stop the bleeding though and, after 16 attempts, they were successful.

After recovering in ICU, a constant dose of factor and a few days in hospital we were able to go home. Little did we know this was just the beginning of Lachie's struggle.

Over the next six months he was back into emergency multiple times, constantly battling to access his veins and get him his life saving factor.

 

Lachie’s experiences have inspired his parents to raise awareness of bleeding disorders. Picture: Charles Eddy
Lachie’s experiences have inspired his parents to raise awareness of bleeding disorders. Picture: Charles Eddy

 

The doctors decided to try a pill camera to see if that could give us some answers.

There was a small amount of trauma as the camera was inserted but everything seemed to go according to plan and, after closely monitoring him in the hospital for the day, we were sent home.

I took a sleeping Lachie upstairs to his cot and as soon as I came downstairs I heard the most horrible sound and rushed back up to check on him.

The image of Lachie standing in his cot covered in blood is one that will stay with me forever. We called an ambulance and the paramedics were astounded at the amount of blood he had lost.

Sitting in the front of that ambulance was the most scared I have ever been in my life. After an incredibly tense trip we made it into emergency where, after another ordeal with access, Lachie was eventually stabilised.

 

Lachie. Picture: Charles Eddy
Lachie. Picture: Charles Eddy

 

Another recovery in ICU was followed by a week in hospital with a constant line of factor. It was determined the insertion of the capsule was what caused this incident and also meant we were no closer to an answer as the excessive bleeding obscured the camera.

It was an extremely difficult time, but Lachie's resilience was incredible.

He was on constant medication for about 18 months after this incident and we slowly weaned him off and he has been pretty stable since.

We didn't want other people to go through what we had been through. Lachie's bravery really encouraged us and made us determined to try and turn these horrible experiences into something positive, so that is what we did.

While we never did find out the cause of Lachie's stomach bleed, these days it's a lot less stressful as Lachie has had a period of really good health.

This has allowed us to focus our energy on creating a documentary film, running a successful community event to support Haemophilia Foundation Queensland and, this year, launching a tongue in cheek awareness campaign.

 

Flynn Eddy, Shannon Gracey, Lachie Eddy and Charles Eddy wearing Bloody Legend shirts during National Bleeding Disorders Awareness Week.
Flynn Eddy, Shannon Gracey, Lachie Eddy and Charles Eddy wearing Bloody Legend shirts during National Bleeding Disorders Awareness Week.

 

We don't know what the future holds and we don't know whether Lachie may have more life-threatening mystery bleeds. What we do know is we are determined to do what we can to make sure families with bleeding disorders going through challenges like Lachie's will have all the support they need.

We are asking people to be a Bloody Legend and support people with bleeding disorders by buying an item from our online store. All of the proceeds will be going to organisations that support the bleeding disorder community.

NOTE: Charles and Shannon hope to hold a premiere of the Bleeding Love documentary in Brisbane by the end of this year.

You can follow them at Bleeding Love on Facebook or Instagram.



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