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Saturday, March 4, 2017

The "World Rare Disease Day" Story

Kennedy (left) and her step-sister Mia as seen on our kitchen table.
It was an ordinary day.  Catching up on the past week and realized that February 28th was World Rare Disease Day.  Doesn't mean a whole lot to many, but when you know someone who happens to be 1 of only 8 people on earth with a specific rare metabolic disorder, and that particular person refers to me as Tad's daddy, it is a big thing.  My youngest son Tad's best friend, Josh, is married to one of the most amazing young women, Donya, who happens to have a little girl named Kennedy.  That little girl was born with the rare metabolic disorder known as S-adenosylhomocysteine hydrolase deficiency, or AdoHcy for short.  The disorder affected Kennedy's brain development, muscles, nervous system and liver.  
Kennedy and Beatrix in a recent photograph.
Now, if you have read this blog for the past few years, you may recall that Kennedy had a liver transplant in the past and has improved tremendously.  I can still recall the day when Donya told me, while standing on my rear deck, that Kennedy's doctor told her that her daughter has been cured.  Well, from time to time Kennedy still has some minor problems with the acceptance of her new liver.  Kennedy recently made a return visit to the Children's Hospital of Pittsburgh of UPMC, where she had a few tests and once again is back to
 her sassy self.  On World Rare Disease Day there were many photos and comments posted on Donya's Facebook page which featured photos of her daughter and one caught my eye.  
Liver donor MIke with Kennedy.
That was a photo of Kennedy and the Pennsyl- vania firefighter, Mike, who so generously donated part of his healthy liver to Kennedy in what was an experimen- tal try to cure her of her extremely rare disease.  Because of that special day when Mike became a hero to just about everyone, the little sweetheart which Carol and I have grown to know and love has become proof that Rare Disease Day really matters.  
Photo of superwoman and mother Donya
with her daughter Kennedy.
Today there are more than 30 children on the liver transplant waiting list at Children's Hospital and if this special day will help to publicize the need to the public for liver donors, than the day has been a success.  I had never heard of the day until a year or two ago, but hope that others will also hear of the day and will agree to donate part of their healthy liver so a child can live a fruitful life.  Many people sent notes to Donya on her Facebook page to celebrate the day and I have included a few of them so you can see how others feel about Kennedy and her family.  May World Rare Disease Day continue to help raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.  It was another extraordinary day in the life of an ordinary guy.  

A few comments from Facebook:

I love 💗Kennedy,growing so beautiful
She's definitely one of a kind!!💜Such a great picture too!
Love you Kennedy. Hugs and kisses from Grammy 
I liver this little girl and I am very blessed to know her
Wow! How big she's getting, and so cute! 
I love someone who is ext "rare" dinarily special! 
Wow! How big she's getting, and so cute!

So proud of Mike & Kennedy inspiring others . Please consider donating and giving another family the incredible blessing Mike gave to us! Donya

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