Jack and Hannah’s story with Aplastic Anaemia

When Jack was diagnosed with Aplastic Anaemia, he and his fiancé Hannah had never heard of the condition and weren’t sure what to expect.

Tragically, Jack passed away after receiving a bone marrow transplant. Hannah has kindly shared her story to help raise awareness of Aplastic Anaemia and other Bone Marrow Failure Syndromes.

Jack was very funny, and he always had everyone laughing. If I had to describe him in one word, it would be sweet. He was very kind, very loving – a real family man. He loved being with his family and hanging out on the weekend. He loved playing games on PlayStation and watching movies. He absolutely loved going to the cinema – which we did weekly. He was a big foodie, always eating out or cooking and trying new recipes. Jack had a beautiful sense of humour and just such a beautiful nature.

Jack had issues with his liver then and was receiving weekly blood tests. A few months later, they noticed a drop in Jack’s platelets, and he was diagnosed with Aplastic Anaemia.

When Jack was diagnosed, it was very scary. Jack’s family and I had no knowledge of it before Jack’s diagnosis. I remember when they first said there was something wrong with his bone marrow, I had no idea what it meant.

Jack’s illness was very intense right from the very start. Within a few weeks of his diagnosis, he already had his first ICU stint.

Jack tried immunosuppressive therapy first, but later we discovered that treatment doesn’t typically work when the patient has liver problems.

After receiving a diagnosis in September, Jack didn’t get a bone marrow transplant until March 2020. This doesn’t seem like a long time, but when this illness is so intense and life-threatening, six months is a very long time.

The bone marrow transplant sounded very scary. Jack had a really rough experience, as COVID was so intense at that time his transplant got delayed after we had just started chemotherapy. His bone marrow donation ended up coming on the last plane that arrived in Australia at that time.

After the transplant, his health was very up and down until he passed in August 2021. Ultimately his bone marrow transplant failed over a year post-transplant. We didn’t think this was possible. We heard stories about making it to the 100 days and patients being ‘safe’. We made it to 100 days, and Jack was doing well. Then he started to get a recurring infection and went downhill from there.

I want to share Jack’s story because I had no idea about Aplastic Anaemia until my loved one got diagnosed. It’s so important to raise awareness because the symptoms can be hardly noticeable, and you can go from ‘healthy’ to fighting for your life within weeks. Bone marrow failure is such a difficult, confusing condition, and treatment is tough. While Jack was in the hospital, there were NO other patients with Aplastic Anaemia – they all had types of cancer.

It is a terrifying, cruel, horrible disease. After reading Maddie’s story, I thought her and Jack’s story was very similar in how gut-wrenching and horrible it was. Jack was so, so brave the whole time, and I couldn’t have done what he did. He never gave up; he was determined to fight this disease and tried everything he could, but the disease was just too horrible.

Jack had so many obstacles that he overcame. He had the roughest time ever. He tried so hard to get better, but his body just couldn’t do it anymore.

I would love to do anything I can to spread awareness and get more funding for this cruel disease. I am very passionate about this and will do whatever I can to provide support and information to others in this position. I need to do this for Jack.

Thank you to Hannah for sharing your story. For those with Aplastic Anaemia who need support or information, please contact our Telehealth Nurse Consultation service via email: [email protected].