Three-year-old Jemma Graham headed off to school on Wednesday, March 20 like it any other day. Soon after, she developed a fever that lasted two days.
By the following Monday, her parents didn’t know how long she had to live.
“It’s every parents’ worst nightmare,” said Jemma’s mother, Trisha Graham, from their southeast Calgary home. “I remember sending her to preschool on the day that she started not feeling well and she was fine.
“She had a big smile on her face and was happy to go to school and then she never went to school again.”
Jemma suffered a seizure through the night. Her mother was terrified when she looked over and saw her limp daughter.
“Monday morning I woke up and I found her in my bed next to me, unresponsive and barely breathing.
“‘Jemma! Jemma!’ I tried to wake her. She was just not there,” Trisha said.
Jemma’s seizures were so severe she spent three weeks in a medically induced coma. Within days, doctors at the Alberta Children’s Hospital had diagnosed Jemma with FIRES, Febrile Infection Related Epilepsy Syndrome, a catastrophic epileptic syndrome that strikes children with no warning.
The seizures are resistant to seizure medications.
FIRES does not have a cure or a known cause. It’s estimated only one in a million children are affected by FIRES.
“They were talking to doctors all over North America — in Boston, Toronto, Houston, Seattle, Chicago — talking to all the doctors and the neurologists in each of those centres because each one of those doctors has only seen FIRES three or four times in their careers,” Trisha said.
“Our doctors were just on it. Our whole team of ICU doctors and neurologist, it just touches me that they reached out to the whole world to give Jemma the best chance.”
The seizures associated with FIRES are hard to treat and the prognosis is poor, with a 30 per cent mortality rate and a high likelihood of permanent mental and physical impairment.
It could be years before Jemma’s parents know the full extent of the damage caused by FIRES.
Despite the cruel circumstances their little girl has been dealt, Jemma’s family remains thankful. They are sure their little fighter will pull through.
“It’s crazy that it was us. But we are so blessed to live in this country, to not be afraid to call 911 and go to the hospital or can we afford these treatments for our daughter.
“We are so blessed that we are in Calgary and the Children’s Hospital has the most amazing neurology team and ICU team,” Trisha said.
Jemma cannot walk or speak now and it could be months before she gets out of the hospital. Her parents have spent every night at the Alberta Children’s Hospital since Jemma was first admitted on March 25.
“It just happened so fast. Everything changed and I think that’s the scariest thing about FIRES: you just don’t see it coming,” Trisha said.
Trisha is now on stress leave from her job and her husband is also not working now in order to be with Jemma.
A GoFundMe account has been set up to help support the family.