Monday, August 18, 2014 Member Login: Sign In Register Member Login: Sign In Register 81 John Bolaris Forecast» Philadelphia, PA Search News Sports Entertainment Business Opinion Food Lifestyle Health More BREAKING NEWS VIDEO VOICES/BLOGS PHILADELPHIA NEW JERSEY POLITICS EDUCATION OPINION OBITUARIES NATION/WORLD WEATHER TRAFFIC LOTTERY After the transplant battle Share Share 2 Tweet Tweet 1 0 Reddit Reddit 0 Email Email 0 0 COMMENTS Sarah Murnaghan with exercise physiologist Mike McBride at Children's Hospital of Philadelphia in April. (Courtesy of Janet Murnaghan) POSTED: Monday, August 18, 2014, 1:08 AM By Pat Toomey Latest News Video In the summertime, kids are typically found outside. My two older children, Bridget and Patrick, ride bikes and swim. Other kids practically live at the baseball diamond or basketball court. It's part of what makes summer special. But for 12-year old Sarah Murnaghan of Delaware County, this summer is extra special: She is just beginning to do all the fun things so many other kids take for granted. Among girls her age, Sarah stands apart. Not because she recently had a breathing tube removed from her throat, and not because she was the grand marshal at the Marple Newtown Fourth of July parade. Sarah is different because she fought for her life and won, Latest News Stories:
and her victory will save other kids' lives too. Sarah, from Newtown Square, has been battling cystic fibrosis for some time now. As her family has told me, cystic fibrosis clogs the lungs and makes it very hard to breathe. Resulting infections further damage her organs. Last spring, at the age of 10, Sarah was close to death. Her condition had grown desperate; her doctors at the Children's Hospital of Philadelphia predicted that she had only weeks to live, unless she received a successful lung transplantation. Suspect arrested in LOVE Park assault With win, Taney parents seek funds to stay Report: Missouri teen shot 6 times Medical need is usually a leading factor for prioritization on the lung transplant waiting list. By that criterion, Sarah would have likely ranked near the top of the donor list for a new lung. But a federal policy prevented children under age 12 from being considered for a mature lung until all adult candidates in the region were ruled out. This made the likelihood of Sarah receiving a life-saving transplant remote, due to the short supply of child donors. Travel Deals Sarah's family took the fight to social media, to the Department of Health and Human Services, and to the Organ Procurement and Transplantation Network. They asked that children under 12 be considered for adult lung transplants - using the same criteria for adult consideration - if doctors substantiated that an adult transplant would be viable. As Sarah herself said, "I'm not going for easy, I'm going for possible." Also on Philly.com BUSINESS: Warren Buffett's top 25 stocks $1238 & up -- Rome & Florence 6-Nt. Vacation from Philly See all travel deals» After speaking with Sarah's mother, Janet, I took Sarah's cause to then-secretary of Health and Human Services Kathleen Sebelius. I asked the secretary to use her authority to make medical need and suitability, rather than age, the primary criteria in determining how organ donations are prioritized. I asked her to free the transplantation network to help children who needed lung transplants. HEALTH: SPORTS: Raising awareness of covert killer: pulmonary fibrosis Hopkins could push Henery My request was not honored. At one point, Sarah's family filed legal action to prevent Weekly Circulars Sebelius from enforcing the policy that prohibited children from consideration. It looked grim for Sarah. But then, a federal judge issued a temporary restraining order, which ENTERTAINMENT: Taylor Swift announces new album titled, '1989' allowed Sarah to receive the life-saving transplant she needed. It was touch and go for a while. Sarah had trouble WALMART: The Best Styles for Backto-School Shopping VALID UNTIL SEP 06 with the first set of lungs. A second set was a perfect fit. Sarah Murnaghan is now breathing on her own and riding her bike with her brothers and sister. She's proof that adult organs fitted to size can work in children. FOOD: La Peg ready to take a bow But Sarah's victory was not yet complete. Her case was an exception and the rule prohibiting suitable children from JOBS: VIDEO: 5 ways to keep employees happy
AMERICAN SIGNATURE FURNITURE: The Style Sale! LAST CHANCE See More Circulars» receiving adult lungs was still in place. This summer, the transplant network permanently revised the under-12 policy. The new regulation, in place on a temporary basis since June 2013, allows candidates age 11 or younger to petition a national lung review board to qualify as an adolescent, which would make them eligible for an adult lung. I was honored to take up Sarah's cause more than a year ago. Along with many other Pennsylvanians, I was thrilled when the Organ Procurement and Transplantation Network amended its rule - permanently - so that children like Sarah are not blocked from potentially life-saving transplants just because of their age. Stay Connected Get the latest Philly.com Daily Headlines newsletter delivered to your email. Sign up now! Enter email address to sign up Already a philly.com member? Yes No Enter email address to sign up Already a philly.com member? Yes No Sarah is a tough little girl. She just turned 12 this month. She has been through a lot, but she has accomplished even more. Along with her family, Sarah fought for her life and for fair treatment for kids needing transplants. She won both battles. Now, she is riding her bike, playing outside, and will soon go back to school with her friends. Pat Toomey is a Republican U.S. senator from Pennsylvania. Share Share 2 Tweet Tweet 1 0 Reddit Reddit 0 Email Email 0 0 COMMENTS Share this story with friends who would like it. We recommend which of your friends would enjoy this story.? MORE FROM THE WEB Who's Frying Up the Best Chicken in Philadelphia? (Zagat) 18 Hilarious Road Signs You Won t Believe (Reader's Digest) Paying Off a Home Mortgage in Half the Time (Lowermybills) What Your Last Name Means (Ancestry.com) Are You Overweight for Your Height? (AARP) 27 of the Most Beautiful Small Towns to Visit in Europe (Trips To Discover) MORE FROM PHILLY.COM You can help Philadelphia clean up its act Five things to do today comedy, sports apparel sale, shrimp broil Kacie McDonnell announces she's leaving Fox 29 Center City residential developers build on the 'wow' factor Curry up, it's time Tell Me About It: Husband must reveal flirting friend
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