A message of hope for Liam
No parent wants to imagine what it is like to be told their child has an incurable disease. For Liam’s family this is their reality.
When their son was only five, their world was turned upside down. In June 2019, Liam was diagnosed with a rare genetic disorder called mitochondrial disease (more specifically POLG disease) that affects multiple organs, motor function, and the nervous system. Liam can hardly walk due to balance and gross motor issues and also suffers from autism and epilepsy.
“There is no cure. Life expectancy is short. When I first heard these words, I was shocked, confused and became angry,” says Kevin, Liam’s father. “I wondered how long we would have with him.” When they learned of their son’s condition, Liam’s parents’ priorities shifted dramatically. They sought advice from medical professionals from all over, looking for answers. It became increasingly apparent that only research could save Liam’s life. And it could take years.
Even in the face of these challenges and the ones brought by COVID-19, this family continues their efforts to help find a cure. “Every day that Liam is alive with us is a good day for our family,” says Kevin. On August 27, 2020, Liam’s dad participated in the Caring for Kids Radiothon, courageously expressing his gratitude to the Children’s and donors like you. In the midst of a worldwide pandemic, he helped raise $1,212,562 for the Hospital’s young patients and their families.
“The Children’s nurses and doctors have been incredibly supportive and caring for our family during our son’s many hospitalizations, and they couldn’t have done it without donors’ generosity,” explains Kevin. Thanks to you, the Children’s can provide the best care possible for Liam and other sick children, and pursue essential research that saves lives – during the current crisis and beyond. Now more than ever, your support gives hope to this family, and to many others.