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Sunday, December 28, 2014

The "You Can Help Save A Little Girl" Story

Kennedy and her mom Donya.  Lancaster Newspaper Photo.
It was an ordinary day.  Ordinary for me, but certainly not so for the young step-daughter of one of my son Tad's best friends, Josh.  Josh and his wife Donya's 3-year-old daughter, Kennedy, is one of eight people in the world with a rare metabolic disorder known as S-adenosylhomocysteine hydrolase deficiency, or AdoHcy.  The disorder affects Kennedy's brain development, muscles, nervous system and liver.  While many parents see their children as one-in-a-million, Kennedy is literally one-in-a-billion!  Kennedy's body is so different than a normal 3-year-old.  Her diet is very limited resulting in a very underweight frame.  Her feet need orthotics in order for her to walk.  She has learned to say Mommy, Dada, Wawa (Josh), Sissy (her stepsister) and Love You.  Her pain is constant, but she battles through it.  In a Lancaster Newspaper article Donya said that when Kennedy was born prematurely on July 23, 2011 at Penn State Hershey Children's Hospital, an MRI revealed that the white matter in her brain hadn't developed properly and one of the staff neurologists said it was "like nothing he'd ever seen before."  Kennedy was then sent to Children's Hospital in Philadelphia for tests.  
Kennedy with her father Nicholas, step-father Josh
and mother Donya.    
Donya sent her daughter's medical records to nearby Strasburg, PA's Clinic for Special Children which is world renown.  It was determined there was only one doctor in the world who could help Kennedy;  Dr. S. Harvey Mudd from Bethesda, MD.  Only problem was that Dr. Mudd had retired 24 years before.  Donya still contacted him and he diagnosed Kennedy in three weeks.  The recessive gene disorder known as AdoHcy had been identified in 2004 by Mudd and other researchers.  Dr. Mudd changed Kennedy's diet, monitored her blood tests and consulted colleagues throughout the world.  Then the bad news struck.  Dr. Mudd had died.  Donya asked to speak at Dr. Mudd's celebration of life service and because of that eventually got to meet Dr. Kevin Strauss.  She pleaded her case to him and he agreed to do his best for Kennedy.  Through a world-wide email chain which included Dr. Strauss,  Dr. Vugrek from Croatia who is a pediatrician and nutritionist, and Vanderbilt University who handled the lab work, Donya was able to feel some relief.  For all Donya's tenacity on behalf of her daughter, she was named 2014 Pennsylvania's Young Mother of the Year by the organization founded by Sara Delano Roosevelt and Mamie Eisenhower.  Donya is also a member of Penn State Hershey's NICU advisory board.  Kennedy is allowed only 20 grams of vegetable or fruit protein a day - no meat or dairy.  She is given two supplements to help with her muscle and brain development.  The fine line between malnutrition and barely enough food is a daily battle for Kennedy as is the accumulation of methionine in the bloodstream.  It was determined that a liver transplant will give her brain and body the best chance to develop.  Kennedy needed a portion of a liver from someone unrelated to her who shared the type O-positive blood.  The search began with sending Kennedy's DNA all over the world.  This brave little girl's life was dependent on a donor being found.  She will be the first in the world to have this treatment for her disease.  Changing the course in medicine and science will be up to Kennedy and her family.  Donya decided to put her plea for the liver on her Facebook Page.  Viola!  Finally a Bethlehem, PA fire fighter's blood type matched and he was willing to give Kennedy part of his liver.  Turns out that the donor, Mike, was a high school classmate of Donya's from Bethlehem Catholic High School.  He said "I was put here on Earth to help people."  But, the journey was detoured slightly when Donya was hospitalized with a kidney infection due to all the stress.  
Members of the Pittsburgh Penguins recently made
a visit to see Kennedy.  Photo by her step-dad Josh.
Well, finally, Kennedy and Mike went to Children's Hospital of Pittsburgh recently for the operation and Kennedy and Mike are now both doing well.  Doctors from just about everywhere wanted to be part of the procedure since it was the first in the world.  Kennedy was released to a rehab facility with a good prognosis.  As of this story, Kennedy is back in the hospital, since her body is now rejecting the liver, but doctors have told Donya and Josh that was expected and happens often with liver transplants.  A change in medicine should help overcome the problem.  One of my reasons for writing about this beautiful little girl is to help raise money to make the financial burden less stressful for the family.  Josh sponsored a motorcycle "Ride for Kennedy" last August, but the need for more funds is apparent.  If you could help Kennedy, click on http://www.gofundme.com/SavingKennedy and make a donation. Any amount would be appreciated.  You will be a part of medical history and how many people can lay claim to that.  It was another extraordinary day in the life of an ordinary guy.  

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