Regina girl diagnosed with rare genetic condition faces limited treatment options
For Scarlett Hicks, everyday life is challenging, as the two-year-old lives with a long list of medical conditions.
She lives with autism, generalized epilepsy and global developmental delays. She also suffers from multiple seizures a day.
"No child should have to live like this," Scarlett’s mom, Jas Hicks, told CTV News.
The family was unsure of what was causing the seizures. However, in August – the family finally received some answers.
"Recently, we got the metabolic’s back and we got NLRP5 gene and BRAT1 gene. We have found out that it is not good. We just don't know how severe it is,” Jas explained.
As Dr. Ken Myers, a pediatric neurologist at the Montreal Children's Hospital outlines, the genes are not a good sign.
"BRAT1 is a gene in which mutations cause a range of neurodevelopmental disorders, but they're all quite severe. Patients that are affected usually have problems almost from the time that they are born,” Myers said.
The life expectancy is unknown because the condition is so rare. It differs with each case.
"There are some patients who live longer. They’re sort of a separate category. They may still have seizures, but they have problems with their balance,” Myers explains.
There are less than 150 people who have been diagnosed with the condition worldwide.
Doctors across Canada are working to develop a cure as there are currently no treatment options available to patients.
"There are many places around the world including SickKids that are working to try and develop genetic treatments including treatments that might be individualized to a specific patient or family for ultra rare conditions like this one,” said, Dr. Greg Costain, a Medical Geneticist at SickKids Hospital in Toronto.
The family feels important to share Scarlett’s story in the hopes they can find a treatment for her.
"I just hope that she'll be that miracle that lives until she's 80 because she deserves a long life after the battle that she's had already,” Jas said.
Right now, the family is focused on spending time together. They hope to be able to take Scarlett to places she’s never been before.
A family friend is hosting a Pasta Night Fundraiser for Scarlett on Nov. 6.
Money raised from the fundraiser will go towards helping the family is their time of uncertainty.
A GoFundMe has also been created with funds from that going towards transportation costs for the family to seek medical treatment in the United States.
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