Personal Story

Joel’s experience with Aplastic Anaemia

Joel was only six years old when he was diagnosed with Severe Aplastic Anaemia. Despite his mother’s medical background as a nurse, it was something the family hadn’t heard of before. This was the start of a complex and often lonely journey for the family as they battled through Joel’s treatment and relapse.

Joel still remembers being asked by his parents, Ian and Judy, how he got the mysterious bruises that kept appearing on his shins in Prep. “I really had no idea where they came from,” he recalls. For an active kid like Joel, bruises from playing weren’t cause for concern at the time. 

However, as the bruises worsened, Joel became increasingly pale and prone to blood noses every night. Judy’s instincts as a nurse kicked in, and she decided it was time to take Joel to the GP.  

Their GP took one look at the blood test results and sent them straight to the Monash Children’s Hospital. “I’ll never forget that night,” Judy says. After finding out that Joe’s haemoglobin was only 43, and his platelets were 11, Judy knew it was serious. 

They eventually received a diagnosis of Severe Aplastic Anaemia. “I had no idea what it was at the time,” Judy says. “It was just the beginning of our journey.” 

A lifesaving gift from his sister

Joel needed platelet and blood transfusions to replace the platelet, red and white blood cells he required, but the only hope at a cure would be a bone marrow transplant. 

Luckily, Joel’s little sister Emily was a match, but a bone marrow transplant is a difficult treatment with lots of potential for complications. After receiving his transplant, Joel was isolated at the hospital for six weeks as his immune system was weakened from the treatment. Ian and Judy shared time staying with Joel in hospital, as only one parent could be in the room at a time, and one parent needed to stay at home with Emily.

Judy says it was heartbreaking to watch their active young son confined to a hospital room, missing out on school and time with Emily. “Joel was very brave during this time. He had school online every day for an hour, which we were grateful for.”

Unable to see her big brother in person, Emily would talk to Joel on the phone and wave at him through the hospital window.

Despite complications during treatment, Joel was discharged and recovered at home. With his immune system still compromised, Judy did what she could to keep Joel away from crowds while still enjoying outings. “We went shopping at 6 am when it was quiet and went to playgrounds when other children were in class. I’d bring wipes to the playground, and if anyone else came, we’d have to leave quickly. It was hard.” 

Eventually, Joel could be around his peers and even return to school. 

Relapse and making connections 

In 2019, Joel began to experience recurrent bruising again. Hoping for the best, Judy took Joel for more blood tests. Unfortunately, they received the heartbreaking news that Joel had relapsed and again had Aplastic Anaemia. 

“Joel and I cried on the way home because we realised that we were back to square one,” Judy says.

Feeling like she needed extra support from people who understood what they were going through, Judy joined a Facebook group for people impacted by Aplastic Anaemia. She met another family in Melbourne with a son living with Aplastic Anaemia the same age as Joel. “We meet up, and the kids play together. It’s just so nice to have friends who have gone through the same thing we have.” The families are still close today. 

Joel started immunosuppressive therapy, which suppresses the immune system so it doesn’t attack the bone marrow. Joel’s red and white blood cells and platelets slowly improved. 

Today, Joel is no longer on immunosuppressive therapy, and his blood levels have returned to normal. Joel, Judy, Ian and Emily now generously help other families going through the same thing by helping raise awareness of Bone Marrow Failure Syndromes. Judy volunteers with Maddie’s Vision, providing her input based on the family’s experience and perspective. 

Joel and Emily even appeared in a recent television commercial for Maddie’s Vision, currently airing on Foxtel, helping bring more awareness to these conditions. 

After everything Joel went through at such a young age, he feels strongly that more research and awareness are needed: “Future research will be lifesaving! It would be good if there were a cure as anyone can get Aplastic Anaemia. Awareness is so important too because it’s so rare, it’s been so hard to explain to people what it is.”  

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