Family hosts private 5K to help fight disease affecting their daughter
FARGO - One Fargo family is running for a cause - and they're doing it at the same time as a group in Denver, Colorado.
Nothing, not even the heavy Fargo fog is going to keep these sneakers off the pavement today.
"There's no cure for it so that's why we want to create awareness and raise money," says Matt Jacques, Edith's mom.
They're talking about Pyruvate Dehydrogenase Deficiency or PDHD.
"It's so rare, one baby in seven years is born with this disorder," says Matt.
It's so rare, the only organization dedicated to find a cure for PDHD, The Elizabeth Watt Fund, is all the way in Denver, Colorado.
The Jacques family didn't want to miss out on their 5K, so they hosted one here at the same time as the one in Denver.
The weather is kind of ironic on Saturday, because like the fog, this disease has been a dense part of the family's life.
"The Future for Edith is tenative," says Matt.
"The doctors told us hey, 'we don't know how long she has to live', it could be a year, take her home, love her," says Julia Jacques, Edith's mom.
Their youngest daughter Edith, dressed like Supergirl, was born with PDHD.
She's missing an enzyme that prevents her from creating energy from the normal food you or I would eat. It took ten months to dianose and the life expectancy is barely over a year.
"You know its hard you kinda just take it one day at a time, that's what we say to ourselves everyday, we take it one day at a time," says Julia.
The future is unknown for the Jacques family and for Edith, but in the last couple months, spirits have been high.
After a visit to the Mayo Clinic and a brand new diet, Edith has been feeling better than ever.
"She didn't ever smile or laugh or coo before the diet and all of those things have been night and day now to where she does all of them," says Matt.
Motivation to keep running, keep hoping and keep looking for that cure.
"We just want people to know about it so that we can help raise money for it and awareness for it too," says Matt.
The Jacques family is planning to continue the tradition and host a 5k every summer from now on. If you'd like to help raise money for a cure, you can find more information by clicking here.