When 10-year-old Ryan Agnew came home from school with a stomach ache, his family never imagined that days later he would be experiencing acute liver failure due to an unknown strand of hepatitis and be in immediate need of a new liver.
Luckily, a match was found and Agnew underwent a 12-hour surgery for a split-liver transplant on Oct. 26, 2009. Today, Agnew is a healthy 14-year-old gearing up to attend Pilgrim High School in the fall and is serving as the American Liver Foundation’s New England LIVEr Champion. He will participate in the Liver Life Walk at Goddard Memorial State Park on Sunday at 9 a.m.
As LIVEr Champion, Agnew has been attending different events in the area and sharing his story to promote not only liver disease prevention but organ donation as well.
“It is more about spreading awareness,” said Agnew. “I am a good example of someone who has had a surgery like this.”
Agnew’s mom, Connie, said that she has seen the affect her son’s story can have firsthand.
“When he shared his story, people were so interested in organ donation,” said Connie, recalling their experience at this year’s Kent County YMCA’s Kids Healthy Day. “One woman wanted to sign up [to be a donor] right away.”
Connie said the most moving event they have been to this year was a practice run of the Boston Marathon with the Run For Research team. Connie explained the Agnew family ran a water station during the practice, which took place just outside of Boston roughly a week before the actual marathon. There were about 100 team members at the practice, many of whom were liver patients.
“I gave a speech on the bus on the way down to get them ready and encourage them,” explained Ryan.
Connie explained that Ryan’s current doctor, Ezequiel Neimark, gave her son’s name to the American Liver Foundation while nominating candidates for LIVEr Champion. Along with Ryan’s positive attitude, Connie believes he was chosen because he has been speaking and raising awareness about liver disease since his surgery.
Only six months after his transplant, Ryan was invited to speak at Yale University’s Organ Donation Awareness Day.
“I was nervous,” said Ryan, recalling his experience on the Yale Green. He said he had a speech written but ended up tossing it away before he got on stage.
“He went right up to the stage with his surgeon and just spoke,” said Connie.
Ryan claims that he just could not capture exactly what he wanted to say until he was on the stage, so that has been his attitude since. He says if he is asked to speak at Sunday’s Liver Life Walk, he will just get up and tell his story.
Despite his surgery, Ryan has been able to live his life as normal. He plays soccer in the fall and plans to join the Pilgrim track team next spring. He also swims and ice skates for fun. Ryan says he had to give up playing competitive hockey because he cannot play contact sports (it is too dangerous to his health) but “it’s not bad.”
“He stays healthy and he does what he is supposed to do,” said Connie, who adds that Ryan has an understanding of his condition and is very responsible. He takes his medication daily and maintains a healthy diet without complaint.
According to the American Liver Foundation, one in 10 Americans is affected by liver disease, but 70 percent are unaware of their condition. To prevent a situation like her son’s, Connie encourages people to get tested for hepatitis, a condition that can affect one’s liver.
Although Ryan has been lucky and avoided complications, he and his family, including his father and older sister Mary Kate, are dedicated to fundraising, both to cover Ryan’s medical costs and provide for research on liver disease and transplants.
Connie said that during a recent trip to Yale, they ran into a doctor who had heard of a treatment study in Illinois where children were taken off their medication without going into rejection. This research could be life-changing for Ryan, and supporting organizations such as the American Liver Foundation provides for such studies.
In the meantime, the Agnew family fundraises to cover the $3,000 worth of medication Ryan requires each month. An organization called Children’s Organ Transplant Association manages the funds they collect.
“People don’t recognize when you experience a catastrophic event, you have bills,” said Connie, who explained with health insurance, they are still responsible for a portion of everything.
Ryan is the top fundraiser for this year’s Liver Life Walk, raising $1,300 as of Monday afternoon. He and his family are thankful to the friends, family and local businesses that have contributed, including Amica Companies Foundation, Chex Finer Foods, Superior Electric, StormTite Company, Ronald Amirault, CPA, American Refrigeration, Quality Seafood, CIS Charities, Mr. FixIt and Tourtellot & Co.
The Agnews are hopeful for a large turnout on Sunday.
“It is a fun day, especially for kids,” said Ryan.
In addition to the 2.5-mile walk, Ryan says there are activities for kids such as the YMCA’s Y On The Move van.
For more information about the Liver Life Walk, to register or to donate, log onto www.liverfoundation.
org/walk and select the Providence Event.