She strolls around the house donning a pink Taylor Swift T-shirt, a backpack and sophisticated oval glasses that wrap perfectly around her stunning blue eyes.
She casually talks about some of her favorite things: unicorns, cows, candy canes, reading, cooking and science. She can recite all the words to her favorite songs and can tell you about the people who sing them, as well as the bios of actors who play her favorite TV characters.
Chelsea Wheeler of Oxford seems like an average 10-year-old girl: she loves animals, is fascinated with her latest school science lesson and watches the Disney channel when she finishes her homework. It is only when you ask about her dreams when you begin to realize Chelsea is not average. What she wants, more than anything, is to be able to eat food, real food, like pizza or pasta.
You see, that backpack she wears constantly is not just a fashion trend - it holds an intravenous system that connects to one of six main veins in Chelsea’s body and provides her nourishment for 16 hours a day. It has been keeping her alive since Chelsea was diagnosed two years ago with pseudo obstruction, a condition that has caused her body to go into irreversible intestinal failure. Due to her condition, Chelsea is in need of a life-saving small bowel transplant.
So, once you learn more about Chelsea’s story - such as she has been sick since birth, has had more than 30 surgeries, has been near death but fought her way back and that she rarely complains about her condition - you realize that no, Chelsea is not average by any means. She is so much more than average. She is fascinating, remarkable, inspirational and deserving of a new lease on life.
Donor List Placement Offers Hope
Since October of 2012, Chelsea has been dependent on Total Parenteral Nutrition, or TPN, which includes a combination of sugar and carbohydrates, proteins, lipids, electrolytes and trace elements. She cannot eat anything besides Italian ice and hard candy. The TPN is not a long-term solution because it is hard on other organs in the body.
In fact, there are only six veins large enough to receive TPN, and the TPN can damage those over time, said Laurie Fernandes, a Wheeler family friend and nurse who is helping the family with public relations to get Chelsea’s story out to the masses.
“You get to a point where you are running out of lines and since it’s the only way to feed her, you eventually will not be able to feed her,” she said. “Central lines are also a high risk for an infection. It goes through your whole blood system and then you get an infection called sepsis, which can cause organ failure throughout your body.”
In fact, last October, Chelsea was rushed to the hospital after she was not able to move half her body. At first, doctors thought she had a stroke. They later realized she had sepsis because her blood pressure dropped dramatically.
After several weeks in the intensive care unit at Connecticut Children’s Medical Center, Chelsea bounced back.
Now, every time she has a fever, she has to spend at least three-to-four days in the hospital so doctors can monitor her progress and treat her early in case she has sepsis.
The good news is that Chelsea has a chance at getting better. She is listed on the National Organ Transplant waiting list.
Now, Chelsea is waiting for a donor. That donor needs to be a deceased child in order to be considered a match. Once that match is found, the surgery will take place at Children’s Hospital of Pittsburgh. That section of the hospital, part of the University of Pittsburgh Medical Center, has performed more than 250 intestine transplants since the program was founded in 1990.
“Children’s Hospital has the highest patient survival rates (91 percent at three years) compared to all other high-volume patient transplant centers nationwide. The national average is 67 percent,” the hospital’s website states under “intestine program highlights.”
Learning of those numbers, which the Wheeler’s have vetted thoroughly, the hospital seemed the only logical choice to perform the procedure.
“They are the best in the country,” said Chris Wheeler, Chelsea’s father.
The Wheelers have already spent an extensive amount of time learning the hospital staff and letting the hospital staff get to know Chelsea. The hospital does not accept all cases, but has decided to take on Chelsea as a patient.
After the surgery, Chelsea will need to stay in the hospital for up to two months, after which she will need to stay in the Pittsburgh area for an additional six to eight months for post-transplant care. Post-transplant treatment will require lifelong medications and follow up care.
Community Steps Up to Help
The Wheeler family and more than a dozen of their friends in Oxford are reaching out to the community in attempts to solicit donations for Chelsea’s care. Chelsea’s mom, Linda Wheeler, will have to move to Pittsburgh with her during and after the surgery. She does not work because she takes care of Chelsea on a regular basis.
Chris Wheeler, a computer consultant, needs to stay home to be at his job in Shelton and take care of the couple’s four other children, Haley, 16, Corey, 14, Nicholas, 12, and Julia, 7.
The Wheelers need to raise $65,000 to pay for transplant-related expenses. They have teamed up with Children’s Organ Transplant Association (COTA), a national charity based in Indiana that is dedicated to helping children and young adults who need a life-saving transplant by providing fundraising assistance and family support. For more than 20 years, COTA has assisted 1,900 patients around the country who have needed a life-saving organ, bone marrow, cord blood or stem cell transplant. Every dollar raised goes toward transplant-related expenses as the nonprofit organization does not take a fee.
The Wheelers kicked off their fundraising campaign on Nov. 19 and have already raised $17,745 as of Thursday, Dec. 5. The town of Oxford has volunteered to help out with fundraising efforts. Oxford will set up a giving tree in the foyer of the Stephen B. Church Memorial Town Hall where people can donate $5 for a dove that can be placed on the tree set up in Chelsea’s honor. All other donations will receive paper icons that will be displayed on the windows inside Town Hall. The effort will last through Jan. 1.
Several other volunteers are setting up fundraising activities that will take place over the next year. They are working on getting celebrities on board to help garner support.
Sacrificing for a Happy Ending
All of the fundraising, caring for Chelsea and frequent, long-term hospital visits take a toll on the Wheeler family. The only way they get through it is by teamwork.
The other Wheeler children are supportive of the amount of time their parents dedicate to Chelsea, and they help out in any way they can. Each parent knows when the other is having a bad day and they accommodate accordingly.
Last fall, Linda and Chelsea Wheeler spent several weeks in the hospital, missing Halloween, Thanksgiving and family birthdays.
“The other kids miss them when they’re gone,” Chris Wheeler said. “They understand, but it’s still difficult.”
When the two are gone for eight months, the family knows it will be difficult at home. But they also know that the end result could be their dream come true: that Chelsea is OK.
School is an Outlet
The past few months have been bittersweet for the Wheeler family. On one hand, Chelsea faces the harsh reality that she needs a rare transplant to survive. On the other hand, she has never seemed so happy.
This is the first year in several that she is able to attend school. Previously, she would get too tired to make it through a full day and needed to be homeschooled. But she has dedicated herself to attending school regularly. Now, she is in fifth grade at Oxford Center School, is having fun learning and is making friends. She has teachers and staff members who care about her, classmates with whom she has fun and girls with whom she discusses her hopes and dreams - and maybe her favorite Taylor Swift songs.
“School is her escape from reality,” Linda Wheeler said. “She uses it as a break from the medical community. When we first talked about the transplant, she was listening to stats and survival rates and stuff that a 10-year-old shouldn’t have to deal with. So now she gets to go to school and forget about it all.”
Until recently, Chelsea didn’t want her peers to know she was sick. She would try to hide her backpack and didn’t want to talk about being sick. In the past few months, however, she has learned that her friends don’t look at her differently: they are on her team, they are pulling for her.
When the Wheelers joined forces with COTA, the family was asked to put information out to the community so that others could help in the cause. Chris Wheeler posted a video depicting Chelsea’s struggles over the years behind background music of her singing the lyrics to “Let Her Go” by Passenger. And, although she was originally reluctant, Chelsea has started a blog on the site. Now, some of her friends have started to follow her blog, and she’s excited that people are rallying around her.
“At first she was upset that we had to do this - why am I costing you money, she’d say,” Chris Wheeler said. “And it’s hard explaining that to a 10-year-old, but we’ve worked on getting her on board. She realizes people want to help.”
And, through her blog and by telling her story to the masses, Chelsea Wheeler is not only telling people about herself, she is giving people a gift of hope and happiness.“She is full of life,” Chris Wheeler said. “She beats to her own drum; she’s got her own band. And it’s a great band. She’s got a great perspective on life.”
Learn more about Chelsea Wheeler's story and donate to her recovery efforts here.