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Sunday, May 8, 2016

The "A One-In-A-Billion Sweetheart: Part II" Story

Check out the cute girl with the red frames.
It was an ordinary day.  Kennedy has arrived for a visit with Carol and me along with our son Tad.  Kennedy is full of energy as usual and greets Carol and me with a hug and kiss.  She asks if I am Tad's daddy and I must reply "Yes" before she heads to Carol for her response to, "Are you Tad's mommy?"  Today Kennedy is sporting a new pair of glasses with red frames.  I ask to look at them and show her the difference between my glasses and her glasses.  Soon after we greet, Kennedy's mother, Donya, is off for a half hour of quiet time to try and regroup from the stress of constant anguish and fear for the welfare of her daughter.  Donya has spent the last four years of her life learning about and administering to her daughter who has the rare disease known as AdoHcy, which is short for adenosylhomocycteine hydrolase deficiency.  Kennedy is one of eight in the world whom has ever been diagnosed with the disease.  Donya is a strong young woman with a smile permanently tattooed across her face.  Carol and I have never known her to be depressed or sad; a truly upbeat person.  But, when you live in constant fear of "what if this would happen or what if…" you must have superior strength and determination.  And, my dear readers, Donya is that special person!  Yesterday I wrote about Donya's quest to find a doctor who could help her with her daughter and finding Dr. Kevin A. Strauss, a Harvard trained medical doctor and head of the Clinic for Special Children in nearby Strasburg, PA.  It was almost as if Donya and Dr. Strauss were put in close proximity with the idea of conquering this disease for all of mankind.  Some time ago there was an article in the Lancaster Newspaper telling about Donya and her quest to save her child.  I loved the article written by Suzanne Cassidy, since it dealt with a mother's search for the cure to save her daughter from the life that the others who suffer from this disease more than likely will face.  At one point in the article Donya says, "We often joke that God was so busy making her so cute that he screwed up a couple of things."  The article also tells how, at the age of 8 months, Kennedy suffered a seizure and was sent to The Children's Hospital of Philadelphia where doctors told her that it was nothing like they had ever seen.  It was recommended she go to the Clinic for Special Children to talk to Dr. Strauss.  It was Dr. Strauss who recommended Donya to Dr. S. Harvey Mudd who diagnosed the disease in three weeks and the eventual encounter back with Dr. Strauss after Dr. Mudd had died.  
Supermom with a smile on her face.
Can you imagine the stress felt by Donya throughout her search for an answer to her daughter's malady?  When our oldest was in a crib and stopped breathing, I can still visualize laying him on our bed and performing CPR until he began breathing once again.  Donya experiences distress such as this on a constant basis.  It was in 2014 that Donya was named Pennsylvania's Young Mother of the Year by an organization founded by Sara Delano Roo
sevelt and Mamie Eisenhower.  She still is on the advisory board at Penn State Hershey's NICU.  At one point in Kennedy's life, Donya had Dr. Vugret in Croatia as her pediatrician and nutritionist, since she felt he was the best doctor for the job.  Dr. Vugret later wrote that "Donya will do anything possible to help her little daughter.  She has achieved a lot for her daughter and will never stop searching for new ways to help her."  I can remember the day, while standing with Donya on our back deck watching Kennedy jump from step to step on our stairs, that she told me that Dr. Strauss told her the latest tests show that Kennedy has been cured of her disease.  
With a wink of the eye, Kennedy can steal
your heart!  Donya sits behind her in this
photo from Donya's Facebook page.
I looked at her in amazement. What great news.  Choosing to have a liver transplant was the right move for Kennedy.  The other seven known to have AdoHcy have not had liver transplants and two have died while the others have significant neurological problems.  Kennedy's life was saved and her quality of life improved because of her mother's valiant fight for her.  And now, Kennedy's DNA is being studied all over the world to hopefully find a cure for others with similar diseases.  Donya's favorite quote from Mark Twain goes like this: "The two most important days in your life are the day you are born and the day you find out why."  And, as Suzanne Cassidy reported in her story in the Lancaster Newspaper, Donya says, "While this is a long and treacherous road, I do believe that I was meant to walk this with Kennedy ... She is a brave little girl who is changing medicine so that other children in the future can benefit from her bravery."  Only a mother with great insight could make a statement such as that.  A mother like Donya!  The one with the big smile!!  So on this Mother's Day, Carol and I would like to nominate Donya as the "Best Mother In The World."  We know she will win hands down!!  It was another extraordinary day in the life of an ordinary guy.   

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