In 2014, when Nathan Box was just five years old, he fell ill with a strange illness that caused him to begin having seizures. His doctors first assumed it was epilepsy, but then the seizures became more and more constant.
Box’s parents took him to the doctor again, which is when further testing revealed that Box had a brain tumor called hypothalamic hamartoma. This medical condition begins during fetal development and is already present at birth. The child will suffer from seizures, most typically, gelastic, or laughing, seizures.
At Box’s worst, he was having up to 25 seizures a day. It didn’t take his parents long to figure out that each of his episodes was preceded by a small smile.
Even though Box’s parents now had a slight warning of their son’s seizures, they gradually began to fear taking their son to school in case one of his seizures struck then. At home, he’d already once split his chin. They couldn’t imagine what would happen if he fell and hit his head at school.
Box’s parents have pleaded to UK’s National Health Service to perform treatment on their son, but the NHS refused.
Some children with hypothalamic hamartoma have been effectively treated in the United States, but the UK-based NHS refuses to perform the same treatment.
Box’s mother said, “The refusal is heartbreaking because we know the treatment is there and we know that it will work. I've spoken with families of a couple of children from the US who have had the treatment and they are now seizure free and back to normal lives.”
In the UK, Box’s parents could continue to pay for medication to treat their son’s condition, but “if Nathan doesn't have the treatment, they will be spending a lot of money on his medication over the coming years which just doesn't make sense.”
The Box family is now desperately trying to raise money to pay for their son’s treatment in the United States and give him a chance of having a normal life.
