Teen Battling Life-threatening Illness Opts For Hospice Care - 47 ABC - Delmarva's Choice

Teen Battling Life-threatening Illness Opts For Hospice Care

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SHARPTOWN, Md. - Teenage years can be tough - but it's been even harder for Emily Clayton. The 16-year-old has been in and out of the hospital since birth, fighting Hirschsprung Aganglionosis - a disease affecting her intestines.

After rejecting an intestinal transplant and developing cancer, she's taking a brave step. Emily has decided to ride out her illness. "Live life to the fullest until you can't. When it's my time to go, I'll go. No matter if it's tomorrow or six years from now. But one thing I ask is I don't want my intestines taken out. If they're going to fail, let them fail. If I were to take them out, my life would be so much harder. It would be painful. I couldn't eat, and I would have to wait two years to even be put back on the list for another transplant - so it's not worth it," she said.
"We don't have to spend so much time up in Georgetown because we're not trying to save anything now. It's a different story. We could opt to save her existence, but if we do that, her life will get a lot worse. It's all in her decision, and we pretty much let her make her own life decisions. It's her body. She's always been really strong and really thought about the decision she needs to make, and making them wisely. I'm very proud of her," mother Lea Clayton said.

Her family says it's not about a long life, but a good life. "We've always known that the chances of Emily living to be very old is slim to none. So we've always talked about what it means to be alive and truly be alive. And if you can't do that, then there's no point in just existing," Lea said.

With the time she has left, she's been spending it with friends and family - and the community is rallying behind her. Donations have been pouring in for her Sweet 16 birthday party. The theme - prom - a rite of passage she may never get to experience. "The community has helped out a lot. If we need something, anybody in the neighborhood tries to help us out as much as they can, and that's a big help," Emily said. "It just shows what a small town can do - everyone takes care of each other here. It just reminds you that people do care. People are there for you. It's just been wonderful. It's a miracle," Lea said.

The party starts at 4 PM this Saturday at Asbury United Methodist Church in Sharptown. A donation box will be there for anyone who would like to make a contribution to Emily and her family. If you're not able to stop by, you can make a donation online at http://www.giveforward.com/riseupforemilyrose.

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