Tuesday, October 18, 2011


This is Dylan.

I posted a while back about helping out Dylan. Dylan is the son of a dear friend of mine who I have known my entire life. Dylan is three and was recently diagnosed with metachromatic leukodystrophy often referred to as MLD. Basically people who are affected by MLD lack an enzyme in their blood. Without this enzyme, sulfatides are NOT broken down and instead build-up in the white matter of the brain and central nervous system causing destruction of the myelin sheath, or demyelination. Without an intact myelin sheath there is a breakdown in communication between the nerves and the brain. This loss of or miscommunication accounts for the loss of acquired functions, paralysis, blindness, seizures and eventual death seen in MLD. You can learn more about MLD here.

Dylan and his family need your help.

Dylan's Mom & Dad
From Dylan's Facebook page:
As they all prepare to cope with this horrible disease, everyone is focused on one thing, Dylan. Their goal is to make Dylan as happy and as comfortable as possible while bringing as many smiles to his face as they can.

In order to best achieve this, they will likely be missing extended periods of work as well as making many trips back and forth to Philadelphia to be sure that they are providing Dylan with the best care that is offered at CHOP, the top pediatric hospital in the country. Dylan will also require special medical equipment and various types of therapy to make him more comfortable as the disease continues to progress.

When I found out about Dylan I decided that I would run The California International Marathon this December 4th in his honor and I wanted to bring awareness to Dylan's situation and help his family at the same time. I wanted to wear a shirt so that everyone running near me for those 26.2 miles will know who Dylan is and raise awareness about MLD. I also wanted my cheering section (aka my family) sporting the same shirts. Heck, they will be standing out there for hours waiting for me to run by, I might as well put them to use and help spread the word right!?

So I set out to find a company that could help me achieve my goals. I reached out to Beth at Shut Up and Run and quite a few other bloggers but Beth sent me to Paul at Family Fan Club. I emailed Paul about Dylan and the same day I received an email back from Paul saying that he could help ... and help he did!

Paul set up The Dylan Flinchum Rockon Foundation store page where you can buy not only New Balance Tech Shirts (ahem, great for running in) but also regular t-shirts, shirts for kids, mugs, water bottles and decals and the proceeds will help Dylan's family!!!!

New Balance Tech Shirt
How cute is that!?

Paul and the rest of the Family Fan Club people had the site up and running in no time at all and have been VERY supportive. I am beside myself with joy over this and The Dylan Flinchum Rockon Foundation Facebook page has posted the link to Dylan's store.

I ask you, beg you and plead with you to please visit the Family Fan Club Dylan Flinchum Rockon Foundation Store page and buy a shirt, a water bottle, a sticker ... anything. Please help Dylan.

And while you are helping out Dylan, please go over to the Family Fan Club page and tell them how awesome they are. You can also "Like" them on Facebook. It is an amazing thing they have done for Dylan and his family.


  1. WOW that's super cool! I will check it out for sure!

  2. Thanks so much Pam. It means a lot to us on a lot of levels to have the support group that we have & you're one of the many people who have gone above & beyond what we could have ever wished for. I've known you long enough not to be surprised at your 'awesomeness' but I am very thankful for you putting it to use to help my family.

  3. My heart goes out to Dylan's family! You're awesome for allowing us to help out! :)

    -Pam (pamula2000@aol.com)