BOZEMAN — A Bozeman family is facing heartbreak and devastation as their son continues to battle a rare genetic disease. But even so, they’re not losing faith.
“I spent the first few days crying and grieving that this is what’s going to happen to him," said Sherine Blackford. "Then I spent the next four days being angry at the world—now, I just want to find a solution."
When Sherine and her husband Mark Blackford’s son Loic began displaying developmental delays at just 14 months old, they began investigating.
“He was having trouble sitting, pulling himself up, he wasn’t walking, or babbling,” said Sherine. “I was on a mission to figure out what was wrong.”
On March 25, 2023, Sherine and Mark received news that would change their lives forever.
“We got on the Zoom call, and they just said, ‘We have some really bad news.’,” said Sherine.
Genetic testing revealed that Loic, now two-and-a-half, was diagnosed with PKAN, a rare genetic condition that affects 1 to 3 in 1,000,000 children.
“They start to describe how bad it’s going to be and I’m just hearing ‘wheelchair,’ ‘feeding tube,’ and it’s not if these things happen to your child, but when,” said Sherine.
Doctors told the Blackfords that children like Loic diagnosed with PKAN aren’t living past the age of ten.
But Despite Loic’s challenges, he has continued to develop normally otherwise.
“He’s such a positive and happy child,” said Sherine. “When he walks into the room he always has a smile and he’s such a bright light.”
Even when he’s taking a tumble.
“While he can walk and run now, he probably falls 10 to 50 times a day,” said Sherine.
There is currently no cure for PKAN, but Sherine refuses to lose hope.
She and her husband launched the Loving Loic website and Foundation within two weeks of Loic’s diagnosis.
“I wanna be really raw and real in sharing our story so other parents have something to look at and find support in,” said Sherine.
To learn more and help support Loic and the Blackfords, you can visit the Loving Loic website.
“My coping through this is finding an answer,” said Sherine. “To either prolong this so he has the best life every single day, or to find a cure."
