Extraordinary Stories

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Saturday, May 7, 2016

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

Preface:  Carol and I have had the honor and pleasure of helping to babysit Kennedy a few times in the past year and this remarkable little girl, whom I have written about before, has been such an inspiration to us as she has been to the entire world.  It was in 2013, about two years after Kennedy was born, that she was diagnosed with the disease known as AdoHcy, which is short for adenosylhomocycteine hydrolase deficiency, by world renown child researcher, Dr. S. Harvey Mudd.  That made her one of only eight people on Earth with the rare metabolic disorder.  While many parents view their child as one in a million, her mother Donya sees her daughter as literally one in a billion.  Dr. Mudd died shortly after he made the diagnosis and Donya needed to find a doctor to carry on the work of Dr. Mudd in helping treat Kennedy.  She found Dr. Kevin A. Strauss, a doctor at nearby Strasburg's Clinic for Special Children, who has been a godsend for Donya and her family.  Today's story deals with Dr. Strauss and his quest for a cure for AdoHcy. 

Kennedy and Mia
It was an ordinary day.  Grabbing a few jelly beans off the kitchen table when I  saw these two little girls smiling at me.  This past Christmas Donya, a friend of our son Tad, gave us the photo which features her daughter Kennedy as well as her step-daughter Mia.  Kennedy is four years old and has just gone through a biopsy of her liver to see how well the transplant, which she had a year ago, is performing.  The results show that the artery to the liver is blocked, but other arteries are supplying enough blood to the liver that doctors will wait and see how she progresses in the future.  Kennedy's chief doctor through all of this has been Dr. Kevin A. Strauss who had to try and replace world renowned children's specialist, Dr. S. Harvey Mudd who had died shortly after diagnosing Kennedy with the disease AdoHcy.  Donya was finally going to have the chance to meet Dr. Strauss, since both she and Dr. Strauss were going to speak at Dr. Mudd's funeral.  
Dr. Kevin A. Strauss in Strasburg, Pennsylvania
Donya had told her husband, Josh, a lifelong friend of our son, while on their way to the funeral, that she had to talk Dr. Strauss into taking Kennedy for a patient if they expected her to get the help she needed.  While hearing the mild mannered Strauss speak, Josh whispered to his wife, "Oh, that poor guy doesn't stand a chance against you."  Dr. Strauss more than likely could see how desperate Donya was and consented to take Kennedy as a patient.  Before long Donya was beginning to act as a mom once again, leaving the doctoring duties to Dr. Strauss.  Dr. Strauss is the medical director at the Clinic for Special Children which is located a few miles from Lancaster in Strasburg, Pennsylvania.  The mission of the clinic, as well as the mission of Dr. Strauss, is to serve a vulnerable demographic which is the Amish and Mennonite children of southeastern Pennsylvania.  It was back in 1993 that Dr. Strauss first made his way along the dirt roads of rural Lancaster County while searching advice on where he should go to medical school.  It was then that he met Dr. D. Holmes Morton who was director of the clinic at the time.  Eight years later, after going through his pediatrics residency, he returned to take over the clinic. The clinic had a great relationship with Children's Hospital of Pittsburgh after they sent one of their patients to the hospital for a liver transplant to help treat the rare liver disease known as MTHFR deficiency.  Knowing that the disease could be prevented if found at birth, Dr. Strauss worked to develop the screening needed to eliminate the disease.  
Dr. Strauss lecturing to an audience about his work with
 the Amish and Mennonites in southeastern Pennsylvania.
The clinic was built on land donated by an Amish grandfather of two girls with GA1, also known as maple syrup urine disease and glutaric aciduria type 1 or "Amish cerebral palsy".  Dr. Strauss eventually  Idecided that Kennedy needed a liver transplant in order to regulate her methionine levels and correct the problem of AdoHcy metabolism.  The transplant would give her brain, thus far behind in development, the best chance to develop.  It was known that the procedure had been done successfully many times for children with the Maple Syrup Urine disease, but Kennedy would be the first person with her disease to undergo a liver transplant.  The operation went well, using part of an adult liver from a high school friend of Donya's.  Kennedy still has a long road ahead, but a recent visit to Dr. Strauss shows she has been cured of her disease.  Donya told me that Dr. Strauss has now cured, or helped others cure, four childhood diseases.  All without any fanfare!  A true humanitarian and a real hero to Kennedy and her family as well as to the entire world.  And, as I look at the photo on my table, I smile back at Kennedy and her step-sister and realize all that this fantastic little girl has gone through and what she has done for society as a whole with the battle she has fought so far in her young life.  Can you imagine the tales she will tell to her children some day!  I only hope I will be around to hear those stories myself.  It was another extraordinary day in the life of an ordinary guy.

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