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HCU Angels – Miles in Memory – Judy & Susie’s Story

Posted on April 5, 2014 by therarerunner
 
The story I’m sharing today is one that I’ll be thinking of when I tackle the toughest part of the Boston Marathon course – Heartbreak Hill and the “Haunted Mile“. 

Most people have heard about the infamous Hearbreak Hill, but it’s actually not as steep a hill as you might imagine.  What makes it so tough is that it’s the last of four hills, known as the “Newton Hills”.  These hills start around mile 17 of the Boston Marathon course and they continue for about four miles.  By the time you reach the top of Heartbreak Hill (the final hill), the glycogen stores in your muscles are most likeley depleted, and many runners experience the phenomonen of “hitting the wall”.

The “Haunted Mile” is between miles 21 and 22.  At this point, you’ve tackled all the hills, and the course ahead is relatively flat.  However, you soon realize that you have five more miles to go.  This is a make or break part of the race for many runners.  I know I’m going to struggle and have to dig deep.  I’m thrilled to have two HCU Angels (Judy & Susie) to help me through these miles! 

Judy and Susie Hempling were sisters living in Buffalo, NY who were diagnosed with Homocystinuria at ages 6 and 2 back in 1963, the year after HCU was first characterized by Dr. Harvey Mudd.  They were not responsive to Vitamin B6.  At the time, there was little information on dietary approaches and Betaine was not yet available.  As a result, they suffered from many consequences of the disease, including displaced lenses, osteoporosis, cognitive deficit, seizures and blood clots. Their parents were encouraged to institutionalize them, but would not even consider it.  Despite their condition, Judy and Susie had many enjoyable moments in life playing with their five healthy siblings, visiting amusement parks, and attending a special needs camp outside of Buffalo, NY.  Judy and Susie passed away in 1972 at the ages of 9 and 14.  One sister, Margie McGlynn, who was in-between them in age, became a pharmacist and has set up a research trust to fund and help develop potential treatments for  HCU. 

 
In 2011, I had the opportunity to meet Margie in Denver, CO at the first and only Homocystinuria conference.  I remember being especially touched by her family’s story, and so impressed by her continued efforts to improve the lives of HCU patients.  I’m grateful for her willingness to share Judy and Susie’s story again, and I’m honored to run in their memory. 
 
Margie, THANK YOU, from the bottom of my heart.  I’ll be thinking of Judy, Susie, and YOU when I conquer Heartbreak Hill and the Haunted Mile!
 
 
If you’d like to make a donation to NORD’s HCU restricted research fund in memory of Judy and Susie, or another HCU Angel, please stop by my fundraising page for the 2014 Boston Marathon:
 
http://www.firstgiving.com/fundraiser/kristinrapp/bostonmarathon2014

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