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Offbeat Dad hopes to raise awareness for daughter’s rare disease

07:35  14 june  2018
07:35  14 june  2018 Source:   cbsnews.com

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The New Jersey dad is hoping to raise awareness about his daughter ' s rare disease . He hopes that by telling her story, they'll get more time together. Brooke's future is uncertain. She's one of only 500 cystinosis patients in the United States. Because it's so rare , there's limited funding for research, and

For New Jersey dad Clay Emerson, Father' s Day has taken on a special significance as his 3-year-old daughter battles a rare disease called cystinosis.

Three-year-old Brooke Emerson is one of only 500 cystinosis patients in the United States.: screen-shot-2018-06-13-at-4-03-03-pm.png © CBS Philly screen-shot-2018-06-13-at-4-03-03-pm.png

HAMMONTON, N.J. — For Clay Emerson, Father's Day has a special significance. The New Jersey dad is hoping to raise awareness about his daughter's rare disease. He hopes that by telling her story, they'll get more time together.

Other than being small for her age, you'd likely never know that 3-year-old Brooke has a disease called cystinosis. It affects cells all over the body that are damaged by a build-up of the amino acid cystine. The disease is hard to diagnose because it mimics other conditions.

From the time she has born, Brooke's parents knew something was wasn't right. 

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"A mother's intuition, I actually knew immediately," Brooke's mother, Jill Emerson, told CBS Philly. "She had a hard time feeding from birth."

"Initially, the things that go through your mind are, 'Am I going to outlive my child?'" she continued "Now, we just want to make sure she has a normal childhood."

Brooke was diagnosed through genetic testing. Her parents didn't know they were both carriers of the gene that causes cystinosis. 

The first symptom is usually excessive thirst. Other symptoms in infants include vomiting, poor appetite, and feeding difficulties. Without treatment, children may develop kidney failure and problems with other organ systems.

Brooke gets a dozen medications around the clock and is nourished through a feeding tube, but she stays busy with her toy animals.

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Father’ s Day has a special significance for one dad whose daughter has been diagnosed with a rare condition called cystinosis.

Dad hopes to raise awareness for daughter ’ s rare disease . For Rare Disease Day, Feb. 28, organizations around the world are gearing up to raise awareness for the public and policy-makers to research debilitating disorders and diseases that don't get as much national attention as more

"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 dad Clay.

Brooke's future is uncertain. She's one of only 500 cystinosis patients in the United States. Because it's so rare, there's limited  funding for research, and treatments are limited, too.

"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."

But as Father's Day approaches, he is still grateful.

"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."

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