A devastating diagnosis
Lynne Mackie was heartbroken when her son Ryan died at the age of 19 from a rare blood disorder called Diamond-Blackfan anaemia (DBA). He was one of only 125 people in the UK with the condition, which affects the production of red blood cells and can cause severe anaemia, bone marrow failure, and other complications.
Ryan was diagnosed with DBA when he was just six weeks old, after he stopped feeding and became very pale. He had to undergo regular blood transfusions and steroid treatments to keep him alive, as well as multiple surgeries and procedures to deal with the side effects of his condition.
Lynne, from Glasgow, said: “He was such a brave boy, he never complained or let it get him down. He loved football, music, and gaming, and he had a great sense of humour. He was always smiling and making jokes, even in hospital.”
A tragic loss
Ryan’s health deteriorated in 2023, when he developed a rare form of leukaemia as a result of his DBA. He was admitted to the Queen Elizabeth University Hospital in Glasgow, where he received chemotherapy and a stem cell transplant from his younger brother Kyle, who was a perfect match.
However, the transplant failed to cure Ryan’s leukaemia, and he passed away on February 14, 2023, surrounded by his family. Lynne said: “It was the worst day of our lives. We were devastated. He fought so hard, but it was too much for him. He was our hero, and we miss him every day.”
A lasting legacy
After losing Ryan, Lynne decided to set up a charity in his memory, called Ryan’s Rays of Sunshine. The charity aims to raise awareness and funds for DBA research, as well as support other families affected by the disorder. Lynne said: “We want to honour Ryan’s life and legacy, and help others who are going through the same thing. There is not enough awareness or funding for DBA, and we hope to change that.”
The charity has already raised over £10,000 through various events and activities, such as raffles, auctions, quizzes, and walks. Lynne said: “We are overwhelmed by the generosity and kindness of people who have donated and supported us. We are very grateful for their help.”
The charity also provides emotional and practical support to DBA families, such as sending cards, gifts, and vouchers to children who are in hospital or having a birthday. Lynne said: “We know how hard it is to cope with DBA, and we want to make them feel special and loved. We want to spread some sunshine in their lives, just like Ryan did in ours.”
A hopeful future
Lynne hopes that her charity will make a difference in the DBA community, and that one day, a cure will be found for the disorder. She said: “We are determined to keep Ryan’s memory alive, and to help others who are living with DBA. We hope that our charity will raise awareness and funds for research, and that someday, no one will have to suffer or die from this condition. We hope that Ryan’s rays of sunshine will shine on forever.”
