By Stephanie Bunt
Researcher and organizer
Miles for Miles
Parenting provides both the most incredible amount of perspective and the least, often at the same time. You recognize what is truly important in life and yet worry ridiculously about simple things; because with this perspective comes the awareness of all that you have to lose.
I thought about this dichotomy as I held my 2 year-old the other night, worried over his high fever and labored breathing. I am fortunate; short of the occasional virus, my child is healthy and I know that he will get better.
My good friend Leah, however, does not have that luxury.
From the moment her son, Miles, was diagnosed at 2.5 years old with progeria, a fatal condition, my perspective was forever changed.
Leah is one of my oldest friends. Although we have been separated geographically for 15 years and our lives have taken very different paths, the birth of our sons a year apart has continued to sustain our friendship.
Miles is a wonderful, charming and smart little boy who gives hugs to everyone and can’t stop kissing his new little sister. His enthusiasm for life even reaches his feet which seem to always be a step ahead of his little body. He loves music and dancing and like most boys his age he is enthralled by dinosaurs and sharks.
Miles was born healthy, but concerns arose when he was found to have poor weight gain and terrible acid reflux at 4 months of age. A battery of tests, hospital stays, two false negative progeria tests, and 2 years later, Miles was finally diagnosed with progeria.
Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a fatal, non-hereditary, genetic condition characterized by accelerated aging in children. Although children with progeria are born healthy, they begin to display many characteristics of rapid aging at 18-24 months. These children fail to grow normally, will lose body fat and hair, develop rapid skin aging, and experience joint stiffness and hip dislocations.
All children with progeria die of heart disease and/or stroke at an average age of 13 years (with a range of about 8 – 21 years).
The intellect of children with progeria is unaffected, and despite startling physical changes in their young bodies, these extraordinary children are intelligent and full of life.
The Progeria Research Foundation (PRF)
Founded by Drs. Gordon and Berns after their son’s diagnosis of progeria, this is the only nonprofit organization in the world dedicated to discovering the cure and effective treatment for children like Miles.
In the last 10 years, the PRF has made leaps and bounds, from its first work discovering the cause of progeria (a mutation in the LMNA gene which leads to cellular instability) to the first “triple-drug trial” including 45 children from 30 countries to find a cure for the disease.
Because children with progeria die almost exclusively from heart disease, the leading cause of adult death in the United States, finding a cure for progeria will not only help these children, but may provide keys for treating millions of adults with heart disease and stroke.
Additional information about this devastating disease and the clinical trial currently underway can be found at www.progeriaresearch.org
Miles became enrolled in the “triple-drug trial” through PRF and although this trial is largely supported through the National Institutes of Health (NIH), PRF is responsible for raising an additional $100,000 to fund the last five children.
In honor of Miles, and to support his continued participation in the clinical trial, our 7-person marathon team, “Miles for Miles,” is running the Pittsburgh Marathon on May 2, 2010 in hopes of raising awareness for progeria and $10,000 for the PRF’s clinical trial through our website www.firstgiving.com/milesformiles.
The runners’ dedication in training and fundraising has been incredible, but the support for Miles from donors across the US has been heart-warming.
My inspiration, which started with Miles, fueled by my love for my child, is actually sustained by Leah and the knowledge that I am “inspiring (her) to take steps to deal with this in a positive and proactive way” and that perspective is enough for me.
Who we are:
• Dr. Stephanie Bunt (Race organizer, pictured to the right): Post-doctoral fellow at the University of Nebraska Medical Center
• Dr. Christopher Bunt: Family Medicine Physician, Assistant Professor of Family Medicine, Uniformed Services University and University of Nebraska Medical Center
• Dr. Jennifer Lundberg: Post-doctoral fellow at Johns Hopkins Medical University
• Todd Lundberg: Manufacturing engineer for Claas
• Martin Muradaz: Pilot, United Airlines
• Dr. Jennifer Keller: Obstetrics and Gynecology Assistant Professor and Assistant Director of Residency Program at the George Washington University
• Charlie Keller: Communications Director for Representative Doc Hastings, State of Washington
How you can help:
Tax-deductible donations through our website go directly to the Progeria Research Foundation to fund the triple-drug clinical trial to ensure that all children, including Miles, can continue their participation and receive the care and treatment they need in an attempt to find the cure for progeria.
Please consider donating any amount feasible to this great cause, because a small donation goes a long way!
For example, $50 will pay for a month of Miles’ medication; $80 will pay for one day of the two weeks every year Miles has to visit the foundation for testing and treatment; $150 will pay for a week of cardiovascular and bone studies; and $210 will pay for a month of lab tests.
About Stephanie Bunt
Stephanie grew up overseas, as a child of diplomats, and met Leah (Miles’ mom) at the International School of Islamabad, Pakistan.
She went on to Vanderbilt University where she graduated with a B.S. in Biology in 1999. After a two-year research fellowship at the NIH, Stephanie attended the University of Maryland, Baltimore County (UMBC) where she earned her Ph.D. in Immunology in 2007 by working on breast cancer.
Stephanie is currently a Post-doctoral Research Associate at the University of Nebraska Medical Center in the Eppley Cancer Institute working on pancreatic cancer therapies. Stephanie and her husband, Christopher, have a 2 year old son, Brayden.
For more information about Miles for Miles, contact Stephanie at firstname.lastname@example.org. Thank you!