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Waiting For Life

Great Falls family holds fundraisers for daughter’s liver transplant.

Unlike most 14-year-old girls, Courtney Payen comes right home after school and takes a nap.

"She doesn’t go out at all, she can’t go out to the mall with her friends," said her mom Lydie Payen. "She’s not active at all."

Born with biliary atresia, Courtney was born without bile ducts that drain bile from her liver into her intestines. As a result, her digestive system is unable to process food properly and white blood cells build up in the bile duct, causing cirrhosis of her liver. Despite various medical treatments and medications, Courtney will need a liver transplant in order to live a normal, healthy life.

"When she was born, she was in the hospital for four months and had to have surgery to connect her liver to her intestine," Payen said of her oldest child. "We were told she had two years to live. She’s 14 now and just starting to get sick to the point where she needs the transplant."

Last fall, Courtney’s immune system started to weaken and she became more susceptible to getting sick, Payen said. After she was hospitalized at Georgetown University, they were told it was time to start a variety of medical treatments to prolong the need for a transplant, a practice mandated by insurance companies.

"She’s never been critical enough to need a transplant, but once the doctors decide she is, she goes to the top of the list," she said.

In order to raise the $50,000 needed to cover the costs of a transplant, Payen has become involved with the Children’s Organ Transplant Association.

When Karen Meengs, a client of Payen’s at her Great Falls nail salon, Nails by Lydie, first learned of Courtney’s illness, she decided she had to help the family in any way possible.

"When Lydie told me that her daughter was sick and might not make it, I had to help her," Meengs said. "She told me she was going to sign up with COTA, and I told her I’d look into them for her to make sure they were a good organization, because I was ready to help her do all the fundraising myself."

AS AN ATTORNEY for 25 years, Meengs had become involved in nonprofit work when her own son, Steven, was ill. "I agreed to be a trustee for COTA for Courtney to keep track of all the fundraisers we had and be responsible for making sure any donations that came in for Courtney went into her trust fund with them.

COTA, Meengs said, is a charitable organization that creates accounts for children who need transplants and makes sure that all costs are covered above and beyond what health insurance will cover. If a family is unable to pay the entire cost of an operation, COTA will make payment arrangements with a hospital to make sure the child is taken care of and any medical bills that the child ever incurs from their transplant, for the rest of her life, will be covered through the organization.

The first fundraiser was held in December and a silent auction was held at the Great Falls Library on Saturday, with local businesses donating goods and services to raise money for the COTA for Courtney P. fund, Meengs said. So far, over $24,000 has been raised, but more will be needed to cover the cost of her transplant.

"We’re not waiting for her liver yet," Meengs said. "There are a number of medical steps the insurance company says she has to try and fail at before she’s considered critical for a transplant and she’s not there yet."

Being forced to ask for help from others is something Lydie and her husband Roge Payen, immigrants from Haiti, found very difficult, Meengs said.

"It was really hard at first," Payen said. "I used to cry all the time when someone tried to give me money, but right now, it’s like I need it. If you give money to me to help my daughter, I’ll hug you and thank you. People want to help and now I’ll let them."

Her husband still finds it difficult to accept donations, she said, but he knows his neighbors in Great Falls are just trying to help them, she said. "He’ll do anything to help her," she said.

"The family is overwhelmed by people’s generosity," Meengs said. "It’s a different world here from where they grew up and they’re so amazed with how people want to help. Their whole life, they’ve been preparing to give up everything to help their daughter."

Payen never told her clients about Courtney’s illness until last fall, when she had to take time off because Courtney was in the hospital, she said.

"Because she wasn’t working for a while, she knew she had to tell her clients what was going on," Meengs said. Once they knew, they began giving her money to help.

"Her clients have been so generous with their donations," she said.

The Make A Wish Foundation gave Courtney a laptop computer to allow her to continue her schoolwork while in the hospital, but Payen initially refused to let their representatives talk with Courtney.

"IN HER MIND, if Make A Wish talked with Courtney, that meant she was going to die," Meengs said. "Up to that point, Lydie had been of the mindset that it wasn’t fair to burden other people with her daughter’s illness."

The fundraiser Saturday raised over $4,500 for Courtney’s COTA account, Meengs said, but many items from the silent auction remained. "Considering how many other things were going on, other fundraisers and McLean Day and the weather being so beautiful, the seven or eight people who came in were incredibly generous," she said, adding that other fundraisers will be planned for the coming months.

In the meantime, Courtney, an honor roll student at St. Joseph’s Catholic School in Herndon, is taking each day as it comes.

"I’m feeling pretty good today," she said Friday afternoon. "I have more good days than bad."

When she comes home from school, she’s often very tired. "I hope after I get the transplant that I’ll be more active and be able to do more things," she said.

Because this is the only way of life she’s ever known, having been born with this illness, she doesn’t get upset that her friends from school can go out and do thins that she can’t do just yet.

As someone who wants to keep her illness a secret, most of the people she goes to school with don’t know she’s sick.

"I don’t want it getting out," she said. "I don’t want people to know I’m sick but it’s good that people are helping me and doing nice things for me."

During a basketball game fundraiser, tickets were sold and donations totaling around $3,500 were received, she said.

"Her doctors sent a note into school to let her teachers know she should not be held back from anything at all unless she decides to keep herself out," Lydie Payen said. "No one treats her any differently at school. She gives 200 percent to keep going at school because she doesn’t want anyone to know, which is why she’s exhausted when she comes home."

"Courtney has a really good attitude," said Michelle Hartz, Courtney’s patient campaign specialist at COTA who has been working with her family since last September.

Her involvement with the Payens has been to train any and all volunteers in Great Falls that are involved with fundraising for Courtney, she said, and making sure that any donations that come in for Courtney are put into her specific account.

"We are a 501 ( c ) (3) organization, so all donations are tax deductible," Hartz said. "All the funds raised for Courtney are not counted against the family’s income, so it doesn’t mess with their Medicare or Medicaid eligibility. The money is only used for transplant expenses."

Courtney’s best chance for a full recovery will be the result of receiving a full liver transplant from a cadaver, Hartz said. "Once she’s on the transplant list, she needs to wait until someone passes away with the same blood type to have the best chance of her body accepting it," she said.

Hartz said she believes Courtney’s positive attitude has helped her stay healthy for so long. "A lot of patients we deal with are not doing as well as she is," she said.

Until Courtney is ready for her transplant and all the money has been raised, Payen said she has hopes for her daughter living a normal life.

"I want her to be happy," she said. "I think that when all this is done and over, she’ll be a different person."

She wants her daughter to be able to do "all sorts of normal teenager things," she said. "Right now she gets fatigued so easily. I hope that some day she can stop worrying about being sick. I would love for her to have normal teenage years."