Deanna Arnold’s father, David Arnold, received a phone call, “Your daughter only has 48 hours to live,” said a Hartford, Connecticut, emergency room doctor one snowy December day. After doctors slashed her from one side of her belly to the other and replaced her liver, she was given five years to live. Seventeen years later, her goal is to help others.
In 1992 Arnold suffered acute liver failure caused by mixture of cold medicines that included Tylenol. After nursing flu-like symptoms at home for a few days, she stumbled in to a Connecticut hospital, collapsed and went into a coma. Two days later, she awoke with a new liver. A 16-year-old girl in the same hospital was involved in a car accident and brain dead. She was a perfect match, and saved Arnold’s life.
Petite with dark brown hair, Arnold stands five feet two. Her friends describe her as a go-getter with a great sense of humor.
“Deanna was thinking that something was missing in her life and wanted to do something that had a sense of purpose,” said Cyndi Dupree, Arnold’s best friend for 17 years. The 42-year-old Dupree also said Arnold often spoke about reaching out to help others that had gone through the same things as her.
Arnold started Dare to Be Alive Foundation, Inc. in 2004. This non-profit started off as a free overnight summer camp for kids with organ transplants.
“I know as an adult how hard it is to deal with taking the medication, having the blood work, the bloated face, people asking you questions all the time. We look like druggies. We’ve got track marks on our arms,” Arnold said.
She wanted to make it easier for kids regardless of their transplant; heart, liver, kidney or bone marrow.
“I just wanted a safe place for kids to be together for one week and to be around other children who’ve gone through the same experience,” Arnold said. “This would also give the parents a chance to breath and chill out.”
The camp didn’t work. She didn’t have the financial backing or enough kids that signed up.
“Deanna has always been a driven person. If she wanted something, she would just go and do it,” said Dupree, who now lives in Georgia. The two met while working part-time jobs at Blockbuster Video in East Hartford, Connecticut.
Arnold wanted the foundation to work. She didn’t want to give up. After meeting with her board members and volunteers, they changed focus of the charity to meet the same goal.
In 2006, the theme was renewed to providing financial assistance, mentoring and social services for all organ transplant recipients. The foundation would help with transportation costs, co-pays, housing, and any type of medical expense related to having an organ transplant.
“All transplant expenses are not covered by insurance. And of course not everyone has insurance,” Arnold said.
“The average cost for medications for those without insurance is about $3,000 per month,” Arnold said. “These pills are taken each day for the rest of your life.”
Bonnie Cockerman’s 54-year-old husband, George, has been on the liver transplant waiting list four years. They leave their residence in a small town outside Bangor, Maine, and travel a grueling 300 miles to appointments at a Boston hospital.
“It’s been very expensive for us to go back and forth to Boston, and Arnold’s foundation helps us with transportation costs,” said Cockerman, whose husband suffers from cirrhosis of the liver after contracting hepatitis C from a blood transfusion. He was in a hunting accident back in the 1980’s. He is disabled and can’t work.
“We don’t have money for a hotel so it ends up being a ten-hour-day trip,” she added.
The mentoring aspect of Dare To Be Alive started monthly support group meetings, open to recipients, donors and family members. There was no set agenda. Sometimes the meeting could be consumed by the tears of one person. However, as of last April, they have not had any meetings due to low attendance, but one is planned for December 15.
Any transplant recipient who volunteers with Dare To Be Alive is matched with another person who needs mentoring. Arnold tries to match organs so they can share the same experiences.
Today, the foundation has 30 volunteers and five committee members. Bob Federicks, who is a board member, volunteer, and transplant recipient said, “Deanna has changed my life and I would do anything for her organization.” He didn’t know about Dare to Be Alive during his January 2006 liver transplant. His daughter read a newspaper article about the foundation and called her dad. “I called Deanna the same day and we’ve been friends since,” said Federicks.
Funding comes from local organizations and grant writing. “We do a lot a begging and pleading,” Arnold said in joking voice.
To date, Dare To Be Alive has helped 32 transplant recipients with financial needs. They have given out about $20,000 in grants. They gave a grant of $1,500 to Camp Sunshine for the 2010 season to send a kid with an organ transplant to camp.
One recent kidney recipient was not happy in her hospital. Dare To Be Alive helped her move to a different medical facility.
Before the transplant, Arnold was the typical 23 year old. She knew how to have a good time. “Life was all about me,” she said.
“I didn’t take care of myself before. Now I’m a vegetarian and health nut.” After the transplant Arnold took up running marathons. She’s tackled the Boston marathon three times and completed one in Chicago. “Do to so many injuries I’m out of the marathon game, my body will know only allow me to run 10K road races– I have signed up for the Hyannis 10K on February 28th of next year,” Arnold said. She mentored a young woman from Maryland who had a liver transplant 17 years ago and wanted to undertake the 26.2 mile course.
Today, Arnold is an office assistant for a window cleaning company. “I told my boss that my foundation is the number one priority in my life,” she said.
With a big smile on her face, Arnold recited activities that are planned for April, organ donor awareness month.
Since that day in December 1992, Arnold said, “It’s not about me anymore; it’s about what I can do to help you. Life is not about me, it’s about you.”
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