Part 2: Local Teen Speaks Out In Her Fight Against Rare Disease - 47 ABC - Delmarva's Choice

Part 2: Local Teen Speaks Out In Her Fight Against Rare Disease

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SHARPTOWN, Md. - 16-year-old Emily Clayton was born with Hirsch Aganglionosis, and she's been in and out of the hospital her entire life.

"When she was born, she was basically given a year," Emily's mother Lea Clayton said. "I've always been sick. I don't know what it's like to not be sick," Emily said.

" Ganglion cells are in charge of motility, so she couldn't move her bowels at all. She lived most of her life with an ostomy," Lea said.

In 2005, Emily was given a complete intestinal transplant. She was doing fine until her body rejected it in 2009. Since then, it's been an ongoing struggle. "She was doing well, but then she rejected again. They had to put her on a stronger anti-rejection medication, and that particular medication causes a certain kind of lymphoma cancer which is called PTLD, and she ended up getting PTLD," Lea said.

Now fighting rejection and cancer, she leans on her loved ones for support. "If I didn't have my brothers and sisters and my parents, I wouldn't be here anymore. People that raised me, all my friends, school are the reason I'm still alive. Without them, I wouldn't have anybody," Emily said.

Stricken by this rare disease, Emily missed out on a lot of experiences other kids might take for granted. Despite this, the Sharptown teen uses her condition as a platform to help others. "She actually is one of the older kids who have had the intestinal transplant, so she mentors other children. In a lot of ways, she's a bright light in a lot of people's lives," her mother said. "Nobody can really help me, so I help everybody else," Emily said.

But she has limitations. "There's just times where I can't help and I feel so bad. I don't know why, stuff like that upsets me. Me missing things doesn't upset me," she said. "She cares a lot about other people. She wants to make it better," her mother said.

In 2010, the Make-A-Wish Foundation wanted to give back to Emily. "What she really wanted, because she had missed out on a lot of our family vacations, was for our entire family, including all of her siblings, even the adult siblings, to go somewhere together - and she didn't care where," Lea said. But two of her siblings were not able to go because of funding issues. "I think if there were more funding at the Make-A-Wish Foundation, then maybe she could of actually gotten her wish," Lea said.

Although Emily didn't get her complete wish, you have a chance to help make other wishes come true at the first ever "Sing To Make A Wish" concert this Friday at Salisbury University. Local schools, theatres, religious organizations and professional singers come together to raise money for the children in our community with life-threatening medical conditions.

"Making that connection in the community has been something that we as musicians in our own lives want to do - to make sure that people know that we're there for them and if there's anything we can do, please let us know. That's what we're all about - empowering people," Director of Sing to Make a Wish, John David Maybury said.

The concert starts at 7:30 PM in Holloway Hall. Tickets are $12. Kids 12 and under can get in for $5.

All proceeds go directly to Make-A-Wish Foundation. For more information, go to

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