Extraordinary Stories

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Thursday, June 23, 2016


Kennedy on the left with her stepsister Mia.
It was an ordinary day.  Reading and looking at short notes and photos posted by Donya on her Facebook Page.  Donya is the mother of Kennedy, the four-year-old who was born with the rare disease known as S-adenosylhomocysteine dydrolase deficiency, or AdoHcy.  She is one of eight people in the world who have ever been diagnosed with this disease.  For most, it was a death sentence, but Donya made it her life's work to find a doctor who could find a cure for it.  Found him right here in Amish Country in Dr. Strauss who found a liver transplant could possibly cure her.  The surgery was performed a little over a year ago using part of the liver of one of Donya's high school classmates who volunteered to donate it for Kennedy.  The operation was a huge success and Kennedy's disease was cured! But, at the time, the muscles around the implant were left un-attached so they wouldn't constrict the new liver.  Well, this past Thursday Kennedy entered Children's Hospital in Pittsburgh to have the final step completed in her surgery. Dr. Kyle would stitch the abdominal wall muscles together to protect the area around her original operation.  An entire team of medical specialists was assembled to help Kennedy with her recovery from the surgery.  The pain from the surgery was expected to very stressful for both Kennedy as well as Donya.  Donya was expecting to be in Pittsburgh for a month while Kennedy healed.  Last Thursday, after the surgery, Donya posted on her Facebook Page: Just saw Dr. Kyle's smiling face. He said that Kennedy did great and the surgery went well. The next few days are going to be very hard on her. While there are less complications than transplant, this will be a much more painful surgery for her. They placed epidural and pic line to keep pain managed as much as possible. We will all get her through this! He also said that he added some extra sass!!!! Like she needs any more of that!!  Then the following day Donya posted: Day 2 post surgery and this little trooper asked to get out of bed and walk! Could not be more proud of this pixie. She included a video showing her superhuman daughter walking and clapping. Two days later, third day after surgery, she posted another video of her husband, Josh, and Kennedy playing street hockey in a commons area in the hospital.  I can't imagine what the hospital staff must have been thinking about this little girl with the sweetest face that could melt your heart in a moment.
Kennedy enjoying pizza five days after major surgery.
Then today Donya posted this amazing message: Out for a pizza dinner date with my favorite girl. She was discharged today!!! Appt. with surgeon on Thur. morning and if all is well...headed home!!! I'm so amazed with this young girl, as I'm sure many, many others are also. All the well-wishes and prayers helped, but the superhuman determination of this little girl is unbelievable.  Our son, Tad, called a few hours ago and asked if we are free next Wednesday to help him babysit Kennedy while her mother takes an hour off for some free time.  We will get to see first-hand this little girl who is making medical history.  Should be fun, but I can't imagine what that extra "sass" might have done to her!  I'm sure I'll need a nap after she leaves Wednesday.  It was another extraordinary day in the life of an ordinary guy.

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