HAMMONTON, N.J. (CBS) — Celebrating Father’s Day has a special meaning for one dad in Hammonton, New Jersey. Clay Emerson is hoping to raise awareness about his daughter’s rare disease.
His daughter is too young to understand what Father’s Day is all about, but hopes by telling her story, they’ll get more time together.
Emerson knows all the tricks of making coloring fun for his 3-year-old daughter Brooke.
At the same time, mom hooks up her feeding tube. Other than being small for her age, you’d never know this little girl has a disease called Cystinosis.
“A mother’s intuition, I actually knew immediately,” said Jill Emerson, Brooke’s mother. “She had a hard time feeding from birth.”
Cystinosis is hard to diagnose because it mimics other conditions. It affects cells all over the body that are damaged by a build up of the amino acid cystine.
“Initially, the things that go through your mind are, ‘Am I going to outlive my child?” said Jill Emerson. “Now, we just want to make sure she has a normal childhood.”
Brooke gets a dozen medications around the clock but she stays busy with her toy animals.
“She’s just a great kid, she really has a heart and despite of everything she goes through on a daily basis, she just presses on,” said Clay Emerson.
Brooke’s future is uncertain. She’s one of only 500 Cystinosis patients in the United States and because it’s a rare disease, there’s limited treatments and funding for research.
“I’m an engineer, I’ve grown up my whole life fixing things,” said Brooke’s father. “This was the first time I’ve encountered something that I couldn’t fix.”
For Clay Emerson, Father’s Day has a special significance.
“Makes me thankful for being Brooke’s father,” he said. “It makes me thankful for the time I get to spend with her and to see her grow and develop. That’s really what it means to me.”
Brooke’s parents didn’t know they were both carriers of the gene that causes Cystinosis. Brooke was eventually diagnosed with genetic testing. The first symptom is usually excessive thirst.
For more information about Brooke and her fight, click here.
For general information about Cystinosis, click here.