According to a story from Cornwall Live, parents Ben Keverne and Hannah Chapman were recently devastated by the loss of their daughter Maisie. The little girl was diagnosed with mitochondrial disease, and her severe case cut her life tragically short. To honor the memory of Maisie, the couple have launched a fundraiser that will help raise funding for mitochondrial disease research and treatment.
About Mitochondrial Disease
Mitochondrial diseases are a group of genetic disorders that causes the mitochondria not to function properly. The mitochondria are an essential organelle that is found in most types of cells in the body, with red blood cells being the only exception. They are responsible for generating energy for the cell. Mitochondrial diseases are usually caused by mutations of the mitochondrial DNA or the nuclear DNA. Symptoms tend to be the worst when the issue affects cells that use a lot of energy, such as the muscles or parts of the brain. These symptoms affect many aspects of bodily function and include poor growth, poor muscle coordination, dementia, neurological issues, muscle weakness, breathing disorders, vision problems, digestive disorders, hearing problems, disease of the kidney, liver, and heart, and learning disabilities. Treatment options are limited in number and in their effectiveness. To learn more about mitochondrial diseases, click here.
Maisie’s illness meant that she had to undergo open heart surgery when she was just two weeks old. She also had to stave off sepsis, a condition in which the body damages itself while it fights off a serious infection. Despite surviving this first ordeal, Maisie continued to be plagued by infections and spent a lot of her time in the hospital. Her mitochondrial disease also led to heart problems, and she had also lost hearing. Six months into her life, Maisie passed away at the hospital. Her parents have expressed how grateful they felt to have had those six months, sharing “Our love for her will never fade.”
Ben and Hannah’s fundraiser will benefit the Lily Foundation. The organization is one of the leading charities in the UK that is dedicated to funding research and treatment for mitochondrial disease. The group also helps support families that are affected by the illness. To support the family’s efforts, click here.
Learn more about the Lily Foundation’s activities here.