Her story, while short and heartbreaking, continues to touch the lives of so many people. Lily was born at just 3 pounds, 8 ounces. Her journey started with unforeseen medical issues that caught her family off-guard. This family encountered a horrible ride from the beginning. At first, they noticed a bad heartbeat on a 20-week ultrasound, but then at 35 weeks, doctors suddenly and tragically found no blood flow from the placenta to the baby.
While Lily was only seven weeks old, her condition suddenly took a turn for the worst. Her parents ended up at Evelina Children’s Hospital after Samira experienced two cardiac arrests after a hospital admission. She was put on life support to allow her to regroup. Yet after a battery of tests, which included a lumbar puncture, doctors were unable to identify the root cause. Unfortunately, shortly after being discharged from the hospital, Lily went into respiratory arrest again while in transit to her home.
Her parents took her straight to East Surrey Hospital. Sadly though, it quickly started to become evident that Lily was in deep trouble. When she got her out of her pushchair she was grey and foaming at the mouth. This was the absolute worst outcome possible for her family, who had already suffered enough.
Though Lily lived for six months after her birth, she eventually lost her battle with a chain of medical complications. The unspeakable grief that caused this family to bury their daughter was clear. At her funeral, they asked that donations be made in lieu of flowers, wanting to turn their tragedy into something productive and powerful.
In the aftermath of this tragedy, The Lily Foundation was created. This wonderful charity has raised more than £11 million so far. It is now helping over 1,300 affected families and patients throughout the UK whose lives are devastated by mitochondrial disease. The foundation, named after the Swedish chemist, represents Lily’s legacy. It shines light on their work and hope to those fighting similar battles.
The effects of Lily’s short life still ring through the community. Families who have been affected by mitochondrial disease take solace and support through the foundation’s initiatives.
“I’m really sorry, there’s no treatment, there’s nothing we can do, Lily’s going to die.”
This blunt unfeeling pronouncement from a health care provider reflects the reality encountered by many families affected by mitochondrial diseases. It highlights the urgent need for more research and investment into these poorly understood, yet sometimes fatal, conditions.