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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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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 .

Feb. 29 was a day of torn emotions for Cindy Just. The 44-year-old Eagle River mother reminisced about her recently deceased 14-year-old daughter , Lindsey, who contracted a rare blood disease last fall and died in late December.

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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When Isabel was diagnosed at age 2, McKeehan said she felt helpless because she didn't know anyone with the disease and wasn't sure what she could do to help her daughter . Related. Genetic disorder AWARENESS ., disorder , genetic, genetic disorder , Grange, hopes , la, mom, raise , rare .

"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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Babiarz hopes his run will raise awareness for Rett Syndrome, a rare and physically disabling disorder that has left his 5-year-old daughter unable to walk, talk and use her hands. The family hopes Babiarz’ s run will help promote awareness of the disease and raise funds to further research.

"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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At Grafton Middle School, the memory of a beloved school counselor is the inspiration for messages of kindness and an upcoming fundraising festival. Assistant Principal Timothy Fauth remembers his first meeting with counselor Julie Flynn -- his job interview."When I walked into the room, obviously a little bit nervous, she was the one who greeted me with a high-five,” said Fauth. That upbeat, infectious personality was Flynn’s hallmark. Her radiant smile was ever-present, despite a lifelong health struggle with a rare disease called VHL.

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