Charlie’s life has been marked by extraordinary challenges. And all that his family are fighting for is an ordinary childhood.
As a baby, Charlie was diagnosed with Infantile Spasms, a devastating condition that causes hundreds of seizures and development to stop. Huge doses of steroids controlled the spasms, but the medication took its toll on Charlie’s little body. He couldn’t stay on them forever, and when he came off them the epilepsy came back worse. Doctors gave Charlie’s parents the heart-breaking news that Charlie’s childhood would be nothing more than seizures and sleep, until eventually he slipped away.
But Charlie’s father was willing to go to extraordinary lengths to ensure his son could experience an ordinary childhood. He had heard that cannabis-based medications were being used in other countries to treat complex epilepsies but were not yet available here. Desperate to find a way to access them, he even considered breaking the law and growing cannabis himself if it meant Charlie would have a chance.
Eventually, the family finally found a private UK doctor willing to try the treatment. It took all the family’s savings, and a court case, but the impact on Charlie’s life has been incredible. Charlie is almost completely seizure free. With the help of his mobility aid, Charlie now has the freedom to move independently and explore his surroundings. He attends school, plays with toys, and his face lights up whenever he gets a chance to splash and play in water.
These seemingly ordinary childhood experiences hold extraordinary significance for Charlie. It was never certain he would get to have them. Charlie’s story is a reminder of the importance of finding innovative solutions and exploring new treatments for children facing complex medical conditions.
Yet, Charlie’s childhood is once again at risk. The breakdown of the UK system means medications that children depend on can suddenly become unavailable. This is the case for Charlie. He will be forced to switch to a different formulation, with no guarantee it will work. Both his family and his doctors are worried this will send Charlie back into seizure, but there are no other options.
#SaveTheUnicorn and stand up for Charlie’s right to a childhood. Together, we can give every child the opportunity for an ordinary childhood