This past spring 7News told you about a Greer family of six whose youngest boy has a genetic disease so rare there are only 500 babies with it worldwide.
No medical expert would deny that Drake O’Sullivan is here today because he was born to parents who simply won’t give up.
“They told us Drake wold live seven days to a month, and he just turned 3,” said Eric O’Sullivan, Drake’s father.
Two to three days a week you’ll find Drake’s mother, Tarah, studying bio-chemistry at Clemson in the hopes of finding a cure.
“We knew that in order for us to get more information, you know, mommy had to go back to school,” said Tarah O’Sullivan.
Right now, there is no cure for the 1 in 70,000 babies born with Nonketotic Hyperglycinemia (NKH), a rare genetic disease that prevents the body from breaking down amino acids.
And now the O’Sullivan’s have more reason than ever to fight for a cure.
Vivian Faye was born in August with a 25% chance of having NKH. The diagnosis came right after her birth.
“It was hard to fathom how you would handle two children so sick and all of the efforts that we’re trying to pursue with research and our other three children. We had to take some time and just be still and get our feet underneath us and try our best to move forward,” said Mrs. O’Sullivan.
“Drake has medicines 4-5 times a night. The baby does as well. We work full time jobs, have 3 other children, she goes to Clemson and we also run a foundation. You don’t have energy to do all these things without the Lord sustaining you,” said Mr. O’Sullivan.
The family is grateful for the hard fought little wins.
Research the O’Sullivan’s did for Drake on how cinnamon extract helps break down glycine more safely than a chemical alternative have allowed Vivian to thrive better than Drake did at her age.
“She kicks around a whole, whole, whole lot,” said Mr. O’Sullivan, who explained the disease affects not just the brain but the muscles.
The Drake Rayden Foundation has raised one third of its goal to pay for gene therapy trials already getting started.
“You don’t know the journey. You don’t know what’s around the next corner, but you keep going, you don’t stop,” said Mr. O’Sullivan.
“I know she’s very sick and Drake is too, but they are just such a blessing. They teach us to take every day with Grace and not to take anything for granted,” said Mrs. O’Sullivan.