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Organ & Tissue Donation Waitinglist

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    •  
      CommentAuthoradmin
    • CommentTimeSep 6th 2010
     

    by Dubravka Kolumbic
    The Central Record staff

    TABERNACLE—Gail and Andy  Clegg of Tabernacle are not ones to dwell on the negative. When their 14-year-old son Sean was hit and killed by a car while he was biking on Hawkins Road in 2008, the grieving parents made the conscious and united decision not to dwell on the darkness of their loss.

    “We wanted to focus on the positive,” Andy explains.

    Two years later, the couple has taken that attitude and done more than focus. They have positively affected a cause near and dear to them — organ donation. Gail now spends over 60 hours a month, with Andy’s support, promoting organ donation education and together they are helping raise funds for The Gift of Life Family House being built in Philadelphia for organ recipient families to stay while their loved ones receive an organ transplant in one of the area’s hospitals.

    The Cleggs’ journey over the last two years has been an emotional roller coaster.

    On Aug. 24, 2008, Sean, a soon-to-be Seneca High School sophmore, his brother Brian, then 13, and a friend were riding their bikes home along Hawkins Road when a car struck Sean and threw him 80 feet into a ditch. At the scene of the accident, the Cleggs were only told that Sean had a head injury and a broken leg. He was airlifted to Cooper Hospital in Camden where the trauma doctor gave the Cleggs a more serious prognosis. One of the nurses on duty, who happened to be a friend of the Cleggs, took them aside and explained that Sean was on life support. They then made the decision to donate Sean’s organs.

    Gail recalls just feeling that it was the right thing to do.

    “Something good had to come out of this.”

    •  
      CommentAuthoradmin
    • CommentTimeSep 6th 2010
     

    Six of Sean’s organs were able to be donated in addition to his corneas and other tissue. The Cleggs have since made it their mission to meet and connect with all of the organ recipients.

    A letter is sent to donor families giving basic information on a donor’s major organ recipients and their post-operative status.

    “We made a promise to Brian at the hospital that if we ever got a chance to meet the people who had Sean’s organs we would take  him there to meet them,” recalls Gail. “And he has, he’s met them all so far.”

    Stefania, at 28, was the youngest of the recipients and recieved Sean’s heart. As a result of her life-saving transplant, 16 months later she became the first woman to give birth to identical twins after a transplant.

    Mercedes, 65, originally from Colombia, was the oldest recipient and received a kidney, after waiting for one for 10 years.

    The Cleggs and Melissa, 39, had a mutual family member connection. As a result, she received the other kidney as a direct donation after four and a half years of dialysis. Melissa now works for Hahnemann Hospital promoting organ transplants.

    Other recipients the Cleggs have yet to meet are the pancreas recipient, with whom they have exchanged letters, a 48-year-old woman who received the liver and a man in his 50s who received a lung transplant.

    Although most recipients are grateful to meet the family of the donors who gave them their lives back, some, such as the recipient of one of Sean’s lungs, are more reluctant. Andy explains that a recipient can sometimes feel guilt that they’re alive as a result of someone else’s loss.

    “Meeting the other recipients has helped us, so maybe him meeting us, maybe we can help him,” Andy hopes.

    Gail says the recipients have been especially kind to Brian. He’s even known as Uncle Brian to Stefania’s twins.

    •  
      CommentAuthoradmin
    • CommentTimeSep 6th 2010
     

    “They understand that he lost his brother, his best friend. They get that, so I guess they try to make it up to him a little bit.”

    The Cleggs recently went to the Organ Transplant Games in Wisconsin with Melissa, the kidney recipient.

    “They feel like family,” Gail explains.

    “They don’t feel like strangers,” Andy adds. “They’re so thankful when you meet them it’s hard to not feel like they’re not strangers.”

    “I don’t think when you first meet (the recipients) you understand how sick they were because they never want to tell you what their plight was,” Gail says.

    “They’re feeling sorry for us,” Andy adds. “You go away thinking how hard they’ve had it too.”

    Stefania, in fact, was near death when she received her heart transplant.

    “What happened to us was terrible and we miss Sean and we’d love to have him back,” Gail explains. “But if I had to sit there and watch my kid suffer, that would be hard to do.

    “I believe everything happens for a reason. I believe that (Sean) was put here for better reasons than we could ask. I just feel like we’re blessed that we figured it out and that we did the right thing. I think the big sin would have been if we closed our eyes to it. We had a choice to make and our choice was to make something positive and try and do something good out of all this than just be miserable, angry and ticked off at the world. We’re not those kind of people.”

    Getting involved with organ donation foundations has given the Cleggs more purpose and focus.

    After Sean’s death, Gail wanted to learn more about organ donation. She soon learned that although there are a lot of organ recipients that promote education on organ donation, there weren’t a lot of donor families doing the same.

    •  
      CommentAuthoradmin
    • CommentTimeSep 6th 2010
     

    “I wanted people to understand ... that as much as the transplant helped the recipients, it helped us. Some people don’t get that it actually helps the donor families. When we came home from the hospital, we knew that we’d actually still get to meet people through Sean. So it wasn’t over.

    “I’ve had people come up to me over the last two years and say ‘I wish when that happened to my child I could have done this or that.’ They didn’t know they could.”

    Just four months after Sean’s accident, Gail began volunteering her time to The Gift of Life in Philadelphia and South Jersey Coalition by speaking in area high schools on behalf of donor families, educating the students on organ donation and the effect it can have on recipients’ lives. A New Jersey state law requires that organ donation education be a part of driver’s education and health classes. It is also mandatory at age 18 to identify on your driver’s license whether or not you want to be an organ donor.

    While speaking to students,  the importance of discussing their decision with their parents is stressed.

    “It’s important to let them know so they’re not thrown off guard,” Gail emphasizes.

    The Cleggs advocate for giving families the option of organ donation, something they had never discussed before Sean’s accident.

    “It’s hard to make that decision the way we had to, in the split second when your whole life is changing,” Gail explains. “What we’re trying to get people to do is to talk about it, think about it and make a decision at home, with their familes and discussing it so people know when it happens what they would have wanted. It takes the guesswork out of it.”

    Gail also speaks to doctors who, she says, don’t often get to talk to donor families and thus don’t understand what they go through. Anyone can request a guest speaker by contacting SJ Coalition or Gift of Life.

    The Cleggs are hosting A Hero’s Grand Slam! fundraiser next month to raise money for the construction of The Gift of Life Family House being built at 4th and Callowhill by The Gift of Life foundation, a nonprofit organ and tissue donor program. The building is being funded solely through contributions and donations and will give recipients’ families an affordable place to stay, at $40 a night, plus dinner, counselors and shuttle service to and from the area’s hospitals. The house will have 30 rooms, housing four people in each room, and as long as they need to, they can stay. Financial aid programs are also being developed to help those families that can’t even afford the $40 a night. The house will be run by an all-volunteer staff.

    The Cleggs and Melissa are hoping to have a “Sean’s room” in the house, with a baseball theme, one of Sean’s favorite sports. Gail is also using the fundraiser as an opportunity to have a reunion with Sean’s organ recipients and family and friends. A Hero’s Grand Slam! fundraiser is scheduled for Sept. 25 at The Shops at Liberty Place in Philadelphia. There will be a live band, food, drink and prizes.

    •  
      CommentAuthoradmin
    • CommentTimeSep 6th 2010
     

    At a recent ball held in North Jersey honoring 300 doctors and nurses that deal with organ transplants at which Melissa and Stefania were scheduled to be guest speakers, three of the nurses in the emergency room during Sean’s ordeal were able to meet with Sean’s organ recipients.

    “That was big for me because without them, none of this would have happened,” Gail said. “They took such good care of us and Sean. It was what they did too that made this happen. And they never had a chance to meet a recipient before.”

    The Cleggs are grateful for all the support they received from family and friends.

    “I can’t even tell you. The whole community has been amazing,” Gail says. Sean’s friends still stop by to visit the Cleggs and socialize with Brian.

    “There’s so many other good (donation) stories out there, so many people that have gone through this and are doing what they can,” Andy says. “I’m not a talker, and yet I find myself talking more and more about this.

    “It’s a very heart-warming experience (meeting donors). And as for all the people that come out and help us and support us, I find it very humbling.”

    Sean’s prophetic posting on his MySpae page the day of his accident gives the Cleggs some comfort that they made the right decision about donating his organs: “We all die ... The goal is to create something that lives forever.”

    What’s next for the Cleggs is to continue their advocacy for organ donation education.

    “You never know what’s coming around the corner,” Gail says. “We’ll see. Your whole life changes.You just don’t know what you can do until you have to.”

 

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