By Frederik Pleitgen and Vivienne Foley, CNN
Click CNN Health for link to the original story on the CNN webpage.
(CNN) — Chelsea Wheeler is a 10-year-old girl with a passion and a plan.
“I want to have a diner,” she says, sitting on her bed in her parents’ house in Oxford, Connecticut.
“I’d like to make things that people think are yummy healthier, less fatty, and make it like they’re being cooked for the Queen.”
Chelsea loves helping her parents, Chris and Linda, prepare food for the whole family. They say she spends much of her free time watching the Food Network looking out for new recipes.
But Chelsea cannot taste the food she makes. She can eat almost no food at all. She suffers from a rare disease that has caused her intestine to fail irreversibly.
“I have an unusual body compared to other people,” she says almost dismissively, but that’s more than an understatement.
Chelsea has to wear a special backpack for 16 hours every day that feeds her nutrients intravenously.
“My stomach doesn’t work and that’s why I have a line,” she says, “because, well, I can’t eat real food so I’ve got to have IV fluids, and so the line goes into my artery so I don’t have to have food to my stomach.”
Chelsea’s “giving tree” at the Oxford, Connecticut, Town Hall allows her donors to hang paper doves with their names.
Chelsea has been sick all her life. She suffers from mitochondrial disease, an energy production problem meaning mitochondria in cells don’t function properly. She also has tachycardia, or a too-rapid heartbeat.
In addition, in 2011 she was diagnosed with intestinal pseudo-obstruction, a rare condition in which the intestine loses the ability to contract and push food through the gastrointestinal tract. This problem led to the intestinal failure.
Her life story is one of pain, suffering and fighting. She’s has had to endure numerous stays at hospitals, more than 30 surgeries and even went into life-threatening septic shock once.
“Last year was our worst, where she went into septic shock on Halloween and woke up in the morning, couldn’t use half her body,” Linda Wheeler recalls.
Chelsea’s situation has deeply affected her family, which includes four other children.
“When you really step back and think about all the activities you go to, it normally revolves around some kind of food. You know, whether its sports, family or birthdays,” says her dad, Chris Wheeler.
Even though Chelsea can’t eat, she does her best to lead a fairly normal life. She refuses to wear her backpack with the nutrients at school, and she sets the table for the family ahead of dinners, even though she’s not able to taste the meals she helps prepare.
“The kids come home from school, and she’s in the kitchen preparing them snacks,” Linda Wheeler says. “It must be her way of coping.”
But Chelsea cannot cope with intravenous feeding much longer. She’s in need of what’s called a small bowel transplant, where the part of her intestine that has failed will be replaced. It’s a fairly rare procedure, but Chelsea’s doctor, Donna Zeiter, says the risks are decreasing:
“As our ability to manage rejection develops, as our ability to manage infection and infectious complications has improved, survivability has actually become quite acceptable.”
It’s not clear when the operation could take place. Currently, 262 patients in the United States are awaiting an intestine transplant, according to the United Network for Organ Sharing. The intestine cannot be taken from a living donor.
“Unfortunately, you’re waiting for a child to die,” Linda Wheeler says. “… They had told us anywhere from six months to three years. So I think there’s no way to know.”
It is clear, however, that the procedure will be expensive, and the Wheelers will have to pay some of the bills out of their own pocket.
Their community of Oxford is helping out. A giving tree has been set up at the OxfordTown Hall, where people who donate can hang paper doves with their names.
“She’s one of us, and we’re very proud of her,” says Oxford First Selectman George R. Temple. “We’re proud of her courage. She’s very happy and upbeat and optimistic and just the kind of kid that you can’t help pull for.”
The Children’s Organ Transplant Association has also taken on Chelsea’s case and started a website and Facebook page, where donations to help pay for costs arising from transplant operations can be made. The Wheelers say if a donor is found, Chelsea will have to remain in the hospital for close to a year, including for the procedure as well as the immediate aftercare.
Chelsea doesn’t seem to doubt she will make it.
“I’m all messed up, but you know, I just have to wait for my transplant, and then most medical things will go away,” she says in a defiant, confident tone.
She continues to plan for her diner: It will be called Chelly’s because that’s her nickname, and she has already found a building in her hometown where she would like to set the restaurant up.
This girl who has fought all her life to stay alive says she wants nothing more than to offer people a great culinary experience — even though she can’t enjoy it herself right now.
“You don’t need to be a millionaire to eat there every night,” she says as her eyes light up, “but you will feel like a millionaire when you eat there.”