Dec 10, 2013
05:54 PMHealth & Science
Oxford Girl Who Aspires to Be a Chef Can't Eat; Awaits Transplant as Family Needs Aid
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Chelsea Wheeler of Oxford may be only 10 but her passion for fine cooking has already led to a recipe for a career—gourmet chef—and the bones of a business plan, which involve opening a hotspot called Chelly’s (she has a currently vacant, barn-like building in Woodbury picked out) that would doubtless be on a fast track to pick up a Michelin star or two.
In terms of obstacles, her age is naturally a factor; there’s plenty of time and lots of learning to go before the first amuse-bouche is served. But vision, passion, drive, confidence and talent in the kitchen—those aren’t among the issues, as a chat with Chelsea and her mom, Linda, across the dining room table in the family’s home makes clear.
There is one significant problem to be resolved: Since October of 2012 Chelsea hasn’t been able to eat and relies on IV feedings to live.
Plagued by health problems since her birth on Feb. 4, 2003, and logging more than 30 surgeries in her 10 years, Chelsea was diagnosed with pseudo obstruction in 2011 when she was 8, which has caused irreversible intestinal failure.
As a result, she needs a life-saving small bowel transplant.
Chelsea is on the National Organ Transplant list, with the procedure to be done at Children’s Hospital of Pittsburgh—and with the family now waiting for the call to come.
What Chelsea endures, and what she faces, is as serious as her hope is abundant, her smile infectious and her attitude so positive that it buoys her entire family—and hopefully an entire community, region and even state, as the Children’s Organ Transplant Association (COTA) teams with the Wheeler family to raise money for Chelsea. The procedure is expected to cost $1.5 million in all, of which insurance covers a portion and the family covers a portion, Chelsea's dad, Chris Wheeler, explains. The goal right now is $65,000 to help cover the family’s additional out-of-pocket costs for just the first four years of the transplant. (Above, Chelsea with her mom. Check out Chelsea's Facebook page.)
There’s a giving tree drive taking place through December at Oxford Town Hall and lots of fundraising events planned through next year, and those who want to help Chelsea achieve her dreams can go online and offer contributions directly.
“Chronic pseudo obstruction is a rare disorder that affects the motility in the intestines,” explains COTA, which was created to ensure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds, and gives 100 percent of funds raised to the family in need. “This can lead to intestinal failure and inability of the small intestines to absorb nutrients that are necessary for life.
“Therefore, a patient that has intestinal failure requires nutrients to be delivered directly into the bloodstream through a special IV or central venous catheter (central line),” the explanation continues. “This IV form of nutrition is called total parenteral nutrition or TPN. A person with irreversible intestinal failure will require this TPN in order to survive as the digestive track function will not return over time. However, long-term use of TPN in a person has life-threatening problems. Almost half of the people on long-term TPN will develop liver disease, which can lead to liver failure and possible death. TPN needs to be given in a very large vein. There are only 6 veins large enough to use for TPN, and TPN damages the veins over time. When all of these veins are damaged, there is no way for the body to get the nutrition necessary for life. Patients receiving TPN through [a central line] are at high risk for infection. This infection can lead to an infection throughout the body, called sepsis. Sepsis can lead to multiple organ failure and death.”
The sooner the transplant happens, the better for Chelsea’s prospects. A small bowel transplant isn’t like other more commonly referenced transplants. There are 106,000 people in the country awaiting kidney transplants, for example, 16,000 awaiting liver transplants and just 225 waiting for a small bowel transplant.
Through Children’s Hospital of Pittsburgh, there are 85 children on the list waiting for a small bowel transplant, with 18 of them in Chelsea’s age range (6 to 10 years old), and 10 in the next group (11 to 17), according to her father, Chris Wheeler.
The age range numbers are important because of size and compatability—and the small bowel can’t come from a living donor.
In other words, a child has to die for Chelsea to live.
The gravity of that is not lost on the Wheeler family.
“You’re basically waiting for something unfortunate to happen,” says Chelsea’s mom, who joined her daughter and Laurie Fernandes, the public relations coordinator for Chelsea and her fund drive, for the interview on a foggy morning last week.
What gets them through—what will hopefully inspire a burst of holiday season generosity—is Chelsea’s charm and optimism. Call it the Chelly’s special; talking to Chelsea you can’t helping thinking how magical the day will be when she grows up and gets to serve her first customer.
“We manage,” Chelsea says after her mom explains that her job is to take care of Chelsea and dad’s job is to try to keep life normal for Chelsea’s siblings, Haley, 16, Casey, 14, Nicholas, 12, and Julia, 7.
“She doesn’t even complain,” Linda Wheeler says, not even when she spends almost every holiday in the hospital over the course of a year. “She always finds the bright side. If she can find the bright side, so can I.”
Later in the conversation, Linda reflects that “people forget about what’s really important in life and take health for granted,” and Chelsea chimes in, “I showed them what’s important.”
“Chelsea always stays positive. She’s such an inspiration—she can’t even eat,” says Fernandes, calling Chelsea caring and compassionate toward others despite, or perhaps because of, the challenges she faces.
And the challenges are not insubstantial.