Lachie is a 17-month-old toddler from Brisbane who has had a rough year.
Parents Shannon and Charles Gracey told Mamamia their little boy has an unresolved gastrointestinal bleed.
“His doctors can’t figure out what is causing it. For a normal kid it probably wouldn’t be as big a problem but Lachie has haemophilia,” said his mother Shannon Gracey.
The Brisbane mother is a symptomatic carrier of haemophilia and was told when she was pregnant that there was a 50/50 chance that her son would have haemophilia.
"Usually females carry the gene and pass haemophilia on to their boys but there are cases like ours where the female’s clotting factor is also low and classed as haemophilia."
Haemophilia is an inherited bleeding disorder where the blood doesn't clot properly. The blood does not have enough clotting factor and that's a protein in blood that controls bleeding.
"Unfortunately Lachie is in a bit of a grey area for treatment as he is only classified as a mild haemophiliac even though he has severe bleeding episodes," says the Brisbane mother.
"Mild haemophilia usually requires very little treatment. Severe sufferers would have a port put in to be able to easily administer the clotting factor for treatment, but this is not a normal course of action for mild haemophiliacs," she said.
"This means that we are unable to treat him from home and any time there is a bleeding episode, we need to take him back in to emergency," she added.
The family are currently in limbo waiting on appointments with rheumatology and dermatology to explore some other possible sources and causes of his bleeding.
"Lachie is taking tranexamic acid which is a drug to help keep clots stay formed for longer. He usually takes this for 7-10 days after a bleed," says Gracey.
The treatment has kept the toddler at home for now but his parents are still on high alert.
"We have to be careful with him bumping his head or any other falls or trauma that could cause bruising or internal bleeding separate to his ongoing gastro problem," says Lachie's mother.
The 17-month-old has learnt to walk but he can't afford to fall over.
Although they have their hands full, Lachie's parents are determined to raise awareness about their son's condition and are making a documentary titled, Bleeding Love.
"Increased awareness should lead to more funding and more funding should lead to more research," says Gracey.
"Hopefully one day there might be a cure for bleeding disorders, but until that time, we want to do our part to get to a point where treatment options are cheaper, more available and easier to administer.
"We dream of a future where there is a cure for bleeding disorders, not just for Lachie but for everyone affected."
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