Rory’s stem cell transplant

I’m reaching out to share our family’s difficult journey with you. At just 10 days old, Rory’s newborn heel prick blood screening revealed that he has no TREC circles, indicating a severely compromised immune system due to very low T cell levels. This condition puts him at immense risk; any infection could lead to serious, life-threatening complications. Since he was 2 weeks old, Rory has been on antibiotics and antifungal medication to help prevent infections. Additionally, since he was 2 months old, he has been receiving immunoglobulin replacement therapy every two weeks, which we administer at home. Following extensive testing, we’ve been informed that Rory will need a stem cell transplant, which will take place in July. This means we will have to relocate to Newcastle, as it is one of the only hospitals in the country that specialises in stem cell transplants, which could be 3-6months depending on Rory’s recovery time. During this challenging time, Rory will undergo isolation for two weeks, followed by chemotherapy to eliminate existing cells. After that, he will receive new cells, for which I will be his donor. If all goes well, we are hopeful that Rory will eventually lead a normal, medication-free life. However, this transition will significantly impact our financial situation. Both my partner, Alex, and I will be unable to work, and we will need to secure accommodation near the hospital during Rory’s treatment. We are humbly asking for your support during this incredibly tough period. Any contributions, even the smallest amount, will help us manage our expenses and focus on Rory’s recovery. Thank you for considering our request. Your support means the world to us. Thank you Lorna and Alex.