Dylan, a 4 years old girl, who loves to play soccer and run. Sometime she races with her dad, Joe Delano. And she wins every time.
Joe is one of my running buddy, who also a Boston Marathon qualifier. Unfortunately, Dylan has to suffer a rare disease, The Glycogen Storage Disease Type Ib. (https://www.counsyl.com/services/family-prep-screen/diseases/glycogen-storage-disease-type-ib/).
Due to a missing or impaired enzyme, Dylan is unable to maintain normal blood sugar levels between meals, leading to low blood sugar (hypoglycemia). As a result, Dylan will be chronically hungry, tired, and irritable unless she eats regularly—typically every 1 to 3 hours during the day and every 3 to 4 hours at night. If her blood sugar reaches a critically low-level, sometime may experience seizures. So far there is no cure and Dylan needs to be under an adult watch for 24 hours. It definitely hard for such an active parents, but it is worst for Dylan. She might not realize it right now, but she has a limitation on her activity. She would not able to kicking ball all day, running with her parents, do camping, and what not.
The first time I heard a story about Dylan, it broke my heart. For me, a childhood should be the time for a kid to be a very active, care free, having a fun day/night, and the best time to enjoy what the world could offer. I believe that happiness will stamps to the kid’s mind and soul, which will be carried till he/she grows up become an adult. Although these disease did not slow down Dylan nor her parents. Dylan is a very active kid, Joe is undoubtedly a great runner on the road or trail, and Cindy is going to do her first marathon at Philadelphia this year.
Mile For Dylan
Then I heard from Joe that University of Florida College of Medicine has been doing research for a cure, but they need more fund. And it become my small obsession to find a way to help Joe with this fundraising. Not only it would be a delightful moment if I can witness Dylan can be running around all day, but also more kids in the future could advantage from this remedy.
So here is my idea:
1. Every 10 dollars from the donation we receive, I will run a mile for it.
**Please assign the runner’s name in the comments area if you want to assign to me or Joe, or any other volunteer runner if there is any. (Updated 07/16)
2. If anyone want to join us to run the mile(s), he or she needs to bring his/her own 30 miles. The donation can be combined from any of his/her donator. Than, he/she will be in the roster as our volunteer runner. And I will email him/her directly for the mile assignment. Then he/she could email me back the tracking info.
**Please make sure that the donator put the runner’s name on the comments area. (Updated 07/16)
3. Every time Joe and/or I will participate in a race, anyone who runs in the same events, can donate their mileage.
**Meaning, the runner could translate his/her miles from the race, full or part of it, into a donation. (Updated 07/16)
How to Donate
This is the most important part, please follow this direction bellow, so University of Florida can inform me how many miles that I need to match. Thank you! Together, I hope we can be a small help for Dylan.
1. Please go to this link:
2. Please fill the “Appeal Code” with this format : RFD
3. **(Updated 07/16)** For donating to our mileage. Please fill the “Comments” followed by the runner name that you want to run it, with this format : Run For Dylan – “Runner Name”
(e.g Run For Dylan – Eric D)
4. For donating your race mileage. Please fill the “Comments” with this format : Run For Dylan – “Race Name”
(e.g Run For Dylan – Escarpment Trail 30K)
5. We can always cross check the miles vs the dollars thru this link weekly, http://goo.gl/QE3Tl2
6. **(Updated 07/16)** The University of Florida will email me weekly for how many miles that I need to match. But, you can email me the receipt if you want me to run it immediately, not waiting till the end of the week. And email me if you have any questions. Email ME.
7. Come to the Final Count Down event on September 24th to give ourselves a beer clank.
The Final Count Down
On September 24th, I will run 35 miles to the bar and we will do the final calculation there and celebrate. If anyone one wants to meet up on the run and share a few miles with me, it will be well appreciated.
531 E 5th St
New York, NY 10009
Date/Time : September 24th, 2014 / 8 pm
: 1266.3 Total miles
: 268.66 >> chart