Dec 10, 2013
05:54 PM
Health & Wellness

Oxford Girl Who Aspires to Be a Chef Can't Eat; Awaits Transplant as Family Needs Aid

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.

 

Chelsea, who is hooked up to a backpack 16 hours a day that delivers the IV feedings, doesn’t like to go out in public with it (she gets to ditch the backpack for the school day at Oxford Center School and loves being back at school full-time after interruptions caused by her illness.)

“We’re fortunate right now. She’s doing really well,” Linda Wheeler says. Chelsea helped cook for Thanksgiving this year (it would be easier if she could taste the dishes, she says), she sits with the family during dinners, and she’s able to have some ice pops and some hard candy like lollipops, which she loves—along with loving candy canes, unicorns and reading.

But that “doing really well” status can easily change.

Even after the transplant, there’s a lot for Chelsea, and the family, to endure. On the bright side, she may be able to have her dream of eating come true in as little as a few days to two weeks after the procedure, but there’s organ rejection to worry about, which is most common in the first three to six months.

After the surgery, Chelsea will have to remain in the hospital for a month or two, and then she will need to stay in the Pittsburgh area for another six to eight months for post-transplant care. Then there’s lifelong care, and anti-rejection medications, whose cost can exceed $2,500 a month.

“We’re going to have to fund-raise for the next year,” Fernandes says of the Oxford drive.

The giving tree was unveiled Dec. 6 during the town hall tree lighting ceremony and will remain up until Jan. 1, with $5 donations for (handmade) paper doves to be placed on the tree. Any other donations will be acknowledged with circle paper icons displayed in the windows of town hall.

Upcoming fundraising events include a holiday bazaar Dec. 14, from 10 a.m. to 1 p.m., at Oxford High School, a dinner and silent auction Feb. 22 at Villa Bianca in Seymour,  Chelsea W. Night at the Bridgeport Sound Tigers next March 1 and a golf tournament next May.

In the meantime, the “waiting game” will go on—with COTA in the Wheelers’ corner, along with Chelsea’s physician in Connecticut, Dr. Donna Zeiter at the Connecticut Children’s Medical Center, The Hole in the Wall Gang Camp and others.

COTA has helped more than 2,000 children and adults needing life-saving organ transplants, bone marrow, cord blood or stem cell transplant, raising more than $70 million. It was founded in 1986 after volunteers in Bloomington, Ind., raised funds to place a child on the liver transplant waiting list.

“Each day, about 77 people receive an organ transplant. Each day, 19 people die waiting for an organ transplant,” COTA says.

Asked about a bigger picture that she would like people to take away from Chelsea’s story, Linda Wheeler cites a greater awareness of the importance of transplants, and for more potential donors to understand “how you can save so many lives.”

In addition to that, she would encourage a broader awareness of the range of very serious conditions and illnesses children face, pointing out gently that cancer seems to all the attention. “There are other sick children in the hospital,” she says.

Chelsea isn’t one of them at the moment, but she faces a long, difficult process filled with time spent in the hospital before she can get back to obsessively watching cooking shows on TV as one part of the foundation for her future—Chelly’s restaurant. And she and her family need the help of caring residents of Connecticut and beyond to get to that new, savory status.

Volunteers are needed to assist with fundraising activities that will help with transplant-related expenses.  Individuals and groups interested in more information can contact Community Coordinator Ray Nappi at 203.305.8719 or ray.nappi@gmail.com.

Donations may be mailed to the Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403.  Checks or money orders should be made payable to COTA, with “In Honor of Chelsea W” written on the memo line of the check.  Secure credit card donations are also accepted online at www.COTAforChelseaW.com.

Oxford Girl Who Aspires to Be a Chef Can't Eat; Awaits Transplant as Family Needs Aid

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