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DJ’s experience with Severe Aplastic Anaemia

For many patients with Bone Marrow Failure Syndromes, a bone marrow transplant is a hope for a cure. But this treatment comes with the risk of serious complications.

Many patients experience poor graft function, a potentially life-threatening complication where the transplanted bone marrow doesn’t produce enough mature blood cells. Patients can develop infections, require multiple blood transfusions, and tragically some may not survive.

When Emily’s son Daijhinmaru (DJ) experienced complications from his transplant following his diagnosis of Severe Aplastic Anaemia, she felt lost, anxious and like she failed. Emily has kindly shared her story with us.

Emily tells DJ’s story…

There were so many questions I asked myself when DJ was diagnosed with Aplastic Anaemia: 

Was it something I did wrong?

Did I take him to the hospital too late? 

Was he taking the right medications?

I mostly felt so bad for my son – I hated watching him go through everything, all the procedures, tubes, medications and stays at the hospital. 

 It was all surreal and daunting for him, his siblings and myself. There were days I had to leave him at the hospital to go home to see my other children. Anxiety kicked in about leaving him.

 When the doctor told me that DJ would need a second transplant as the first one wasn’t successful, I was so tired and felt defeated. 

After leaving the hospital, I told DJ that it was nothing he did wrong or anyone else, but he needed to get it done so he could get better again. When he smiled and said he was okay with it, it made all the anxieties go away.

If my son who was going through all of this can smile and be brave, I needed to brave too.

DJ was so brave throughout both transplants and recovery. He loved playing bingo daily and would win prizes for his siblings at home. They loved when I’d go home with gifts from their brother! He also enjoyed his school, music and art sessions with the hospital teachers. He loved having time to play on his Nintendo Switch the most.

On September 7, 2022, DJ’s haemoglobin went up for the first time in three years! 

DJ got to do a lot of fun stuff when he started feeling better, like going to a Melbourne storm game with some of his siblings and also running in with the Saints at the last Maddie’s Match. He got a team shirt and took his younger brother JJ, DJ’s donor, for his first transplant. It was their first AFL live match, and they both loved it. The Saints played the Tigers and won. It was funny because I was going for the Tigers and the boys were going for the Saints. Thanks to Nurse Mei-ling, who got us the tickets, and we watched the game in the corporate box, which was such an amazing experience.

They both went through DJ’s first transplant together, and JJ was happy to donate his bone marrow to his older brother. It made them so much closer. JJ even got to go into DJ’s isolation room in Kookaburra to hang out with DJs while he received the marrow, which was a blessing.

All in all, it was the love, grace and healing of our lord Jesus Christ that got us through it all. While in the hospital through every procedure, we had family prayer over Webex with my children at home and some family, which helped DJ be so strong and also myself.

It was a shocking and extremely happy day for our family. He hasn’t needed a transfusion in months, which is still shocking now, but it shows how far he has come and how amazing he has been.

After a difficult journey with complications from his first transplant, DJ is recovering well after his second transplant and is back to doing all the things young kids should be doing, like watching St Kilda and Melbourne Storm play, spending time with his siblings and going to school full-time.

 If it wasn’t for the work and research that Maddie’s Vision does and continues to do, my son would not be healthier and thriving again. 

There is still so much research to do to help people like my son, so please please keep funding this research.

It saved my son’s life, and will continue to save others.

Thank you so much for your support,

Emily and the Ulutupu-vaasili aiga Family

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