Hello! My name is Carlen “Ryan” Merritt II and this May, my dog Willie and I will attempt to thru-hike the Appalachian Trail (AT), to raise awareness and funding for future research in Wolf-Hirschhorn Syndrome (WHS). In hopes that one day patients with WHS will have a better quality of life.
A little bit about myself, I am 25 years old from good ole West Virginia. I am very family oriented, my family is/has always been there for me and has taught me the true meaning of what family is. Just days before I start my hike, I will be graduating from Marshall University with a bachelor’s degree in biochemistry. During my time at Marshall University, I have developed a strong passion for biomedical research, as I have researched hematopoietic stem cells since November 2017, in Dr. Vincent Sollars laboratory. Also, I thoroughly enjoy a few outdoor activities such as backpacking, kayaking, mountain biking, and hiking. For most of these hobbies I have got to share the experience with one of my closest friends, my cousin TJ. TJ and his wife Jessica have a child, Peyton, whom was born with an extremely rare genetic disorder WHS, when they first told me about the syndrome it was completely new to me. After witnessing some of the health complications that Peyton endures, and the limiting aspects that affect Peyton’s family, has made me want to help out in some way. After reading various blogs and articles about WHS, I realized that patients with WHS don’t have the best odds for bright outcomes and the challenges the families encounter can be very difficult.
So, I have decided to dedicate my Appalachian Trail thru-hike to fundraise for future research in Wolf-Hirschhorn Syndrome and to bring awareness to this rare genetic disorder. For me this is a way to tie together 3 major parts of my life that I am deeply passionate about; Family, the Outdoors, and Research.
More about Wolf-Hirschhorn syndrome (WHS):
Wolf-Hirschhorn syndrome (WHS) is an extremely rare chromosomal disorder caused by a missing piece (partial deletion or monosomy) of the short arm of chromosome 4 (4p-), · a hemizygous deletion of chromosome 4p16.3. · It occurs in 1 in 50,000 births with about 1,200-1,500 cases worldwide. · ~2/3 are female and 90% have seizures. · ~1/3 decease within the first 2 years of life · Delayed growth and development; Slow growth begins before birth, and affected infants tend to have problems feeding and gaining weight (failure to thrive). · Weak muscle tone (hypotonia) and underdeveloped muscles; Motor skills such as sitting, standing, and walking are significantly delayed.
You can follow my journey here on Facebook: https://www.facebook.com/Hike-for-Wolf-Hirschhorn-Syndrome-2112572712172636/?__tn__=HHH-R