Miles For Mickey

About Kevin and His Goal:

I am a 41 year old father of two boys, Husband and for fun I run ultra-marathons. (Any distance over 26.2 miles) If I’m not working or busy being a dad, I’m running. I love to trail run and spend time in the woods. Now I am looking to do something that I love and use it to raise money for close family friends.

Last year our friends Molly and Donny Merrill found out their daughter Michaela suffers from a rare genetic disorder with no cure called Sanfilippo Syndrome. As a parent I couldn’t imagine what Molly and Donny are going through, but I wanted to help in some way. Inspired by Molly and Donny’s strong, spirited and determind approach to tackling their daughter’s condition, it motivated me to come up with this idea to run 100 miles for Mickey. My hope is to raise money per mile I run.

I have completed a handful of ultra-marathons ranging from 30 miles up to 100 miles. On May 19, 2018 I will be toeing the line for the second time at the Massanutten Mountain Trails 100 Mile Run (MMT100). The MMT is a challenging 100 mile trail ultra over a demanding, rocky course in the Massanutten Mountains of Virginia’s Shenandoah Valley. The race starts at 4:00am and I will have 36hours to complete my goal. Last year I completed the race in just under 32 hours and I hope to better that time this year. That being said, anything can happen during 100 mile race to prevent one from finishing. For example, physical injury, nausea, dehydration, mental fatigue, poor weather conditions etc. There is no guarantee that I will finish the race, but I’m going to try like hell. You will be able to track my progress at<u>http://www.vhtrc.org/mmt/</u> on the day of the race. For every mile you commit too, that money will go directly to Save Mickey.

About Mickey

Michaela (“Mickey”) Merrill is 4 years old and was diagnosed with Sanfilippo Syndrome a rare genetic disorder sometimes referred to as childhood Alzheimer’s. Mickey has subtype-A which is the most common and also, unfortunately, the most severe. She is a bubbly, delightful little girl with a big belly laugh and a giant smile she shares with everyone. She loves her Bear and likes to show off “her baby” little sister Maya. Most of all, Mickey loves to ROCK OUT on the drums!

Michaela was a happy, seemingly quite healthy baby. As the disease progressed, however, she began to lag behind developmentally, especially in speech. It was determined that she has hearing loss and is nearsighted, and testing was performed to see if these issues were related. The testing unexpectedly discovered that she has Sanfilippo.

As the disease progresses, children with Sanfilippo like Mickey lose their abilities to speak and understand, to walk, and to eat. The current life expectancy is 10-20 years, with an average age of death of only 15 years old. Currently there is no treatment or cure, but promising research is happening as we speak in both the US and abroad, so there is still hope for her. Her family and friends are working hard to get Mickey admitted into a clinical trial as soon as possible. With the degenerative nature of this illness, time is precious.

Thanks you for considering this fundraiser and helping Mickey.

*Disclaimer: Virginia Happy Trails Running Club (VHTC) or the MMT100 Race organizers are not affiliated with this fundraiser. Kevin is using his personal ultra running goals to raise money for Save Mickey.