Sain battling rare liver disorder
Thomas Lester, News Writer
Four-year old Skylar Sain is like a lot of other kids her age. She likes to draw, play and laugh like any happy youngster.
But Skylar is unlike any of her peers in another way a way she needs help to correct.
Skylar, the daughter of Eric Sain and Melissa Nester, was born with bilary atresia, which means her livers bile duct never fully formed. When she was 10 weeks old, doctors performed surgery to take a part of her small intestine to create a duct so the bile can drain from her liver.
Its working but shes basically got cirrhosis, said Nester. They said there was too much damage to her liver. They told us when she was 4 or 5 months old, she would need be put on the liver transplant list. Not long after that, we started going to Duke and they listed her. She has been going there ever since.
Nester said when she found out about Skylars condition, she wondered if it was something she did. Doctors reassured her that it wasnt the case and Skylars condition was a rare disorder with an unexplainable cause.
They told me whenever we found out she had this, it was a rare disorder, Nester said. They dont know what causes it. The first logical thing was did I not do something right when I was pregnant? They said it was just one of those things, they didnt have a known cause.
Nester said early on, Skylar visited the hospital about four times in the first six months of her life. Since then, she has only been once and because of her relative health, doctors put her on the inactive list.
But recently, Nester said Skylars liver began acting up again.
She had been doing well enough and they had placed her as inactive because she was growing and her blood levels were staying good, she said. About a month and a half ago, we noticed a knot. Thats her liver. They did a CT scan and said her liver is enlarging so they reactivated her on the list.
Nester said with Skylar on the active list, she could be called in for a liver transplant at any time, so the family has to be prepared to go to Durham, N.C. for treatment at Duke Universitys medical center at a moments notice.
Nester said doctors have advised her to begin raising money for expenses associated with the procedure.
When she has the surgery, they said the minimum she will be in the hospital is two weeks, Nester said. Depending on how she does, maybe longer. Well run into the cost of housing and things like that because when she gets out of the hospital, we may have to stay down there and be near the hospital for a while. Then it will be weekly visits and gradually spacing them out more from that, depending on how well she does.
To that end, Nester said the family is hoping to have a benefit dinner and auction at Grover King VFW Post 1115. She said her mother, Mary Nester, is trying to secure the building for the event and the family is accepting donations of food and auctionable items to be used during the fundraiser. Nester said the family has also set up a bank account through Grayson National Bank to handle the expenses.
Anybody that wants to can tell them they want to make a donation to the Skylar Sain Benefit Fund and they will put the money directly into the account, Nester said. That account will be used just for anything with the expenses for her treatment.
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