During last year’s Boston Marathon event for NORD, something special happened. My patient partner Rebecca, made a wonderful piece of artwork; a stained glass rose for our online silent auction. The rose was purchased by a Genzyme employee, Erin, because of the significance of the piece. Erin’s granddaughter, Lily, was born the previous September and sadly was diagnosed with Pompe disease at birth; the same disease that has plagued Rebecca all her life.Â
Over the last two years, Rebecca has taught me about the importance of ‘connecting’ and how we can together make a significant difference in the lives of others. When she learned of Lily, she wrote “who would know that working extra hours on the window after work each day to make it possible to arrive in boston with the rose, would bloom into a heart connection that is so profound to us all… i knew with all my heart i was on a mission. little did i know that that honoring, of genzyme, phil and the marathon runners, of life and hope… would come full circle by way of erin’s love and bless me to my very core!â€
In the spirit of ‘full circle’, I met Erin on her very first day at Genzyme as I gave the site introduction presentation during her Genzyme orientation. After the auction, I arranged to get the window, which is now named ‘Lily’s Rose’, to Erin and we talked for a while in my office about Lily and how difficult it was for her parents and grandparents with the uncertainty of Lily’s future. During this meeting, I mentioned to Erin that I was one of 150 lucky U.S. lottery winners enabling me to compete in the 2011 Ironman World Championship in Kona, Hawaii on Oct. 8. An Ironman is a 140.6 mile triathlon consisting of a 2.4 mile swim, followed by a 112 mile bike, and finally a 26.2 mile marathon.  Shortly thereafter, she brought Lily into Allston and we met in my office. 
She is an amazing little girl, and I decided immediately to compete in the Ironman on Lily’s behalf to help raise money and awareness for the United Pompe Foundation.   Â
On June 25 however, I was in a serious bicycle accident during a training ride that put significant doubt in whether I would be able to compete. I was riding on wet pavement when I approached a metal crated bridge. My rear tire came out from under me and I crashed down on my head, shattering my helmet and rendering me unconscious for a short time. My recovery took about five weeks. Fortunately, Ironman extended my registration time as I determined whether I would be able to compete. On August 16, I made the decision to compete but still had a lot of uncertainty of whether I would be able to make the 140.6 mile distance.
Persevering through this injury was challenging, but nothing compared to what patients with rare diseases have to endure when competing daily in life.   Throughout my recovery, I hoped that I would get to the point where I could confidently deliver on my promise to Lily and family and at this point, I am ready to execute the plan.
While time is short, I am organizing a raffle to raise funds and awareness for the Pompe Foundation in Lily’s honor. Who doesn’t want to go to a New England Patriots home game? Win a pair of tickets to an upcoming game (See Below). A raffle ticket costs only $14.06 – signifying the miles (140.6) I’ll be completing in the Ironman for Lily – and all proceeds go directly to the United Pompe Foundation.    Lily and family will draw the winning ticket on Friday, October 14, 2011. You can donate $14.06 online at www.unitedpompe.com for a chance to win or see me to purchase tickets directly.
Game Details: (DONATED BY JACOBS ENGINEERING)
New England Patriots vs New York Giants
Sunday, Nov 6, 2011 at 4:15pm, Gillette Stadium , Foxboro, MA
Section 334 Row 8
 Thank you for your support,
Phil
how is it i did not know of your accident? oh my heart just stopped reading this. somehow our lives have been too busy when everything needed to come to pause so we could all be there for each other.
i love your strength and courage, and this picture of lily, gorgeous! you as an iron man?
be still my heart!
now my only question is how can i help with your raffle? and do you need a cheerleader in Kona???? even with this late notice i am sure erin and i could clear our dance card for YOU!
LILY’S ROSE
HAD THE PLEASURE OF MEETING LILY LAST MONTH.
WHAT A DOLL.
GOD BLESS YOU PHIL
I am Lily’s great-great aunt and I am so very touched by your determination to do the Iron Man. Lily is a very special little girl whom I adore!! I wish you the very best luck and good health for your endeavor. Thank you so much for your commitment to Lily and Pompe disease.
That is amazing! I was following the coverage of the Ironman all weekend from Chicago. I was there running the marathon. I recently completed my first half ironman (Pumpkinman in South Berwick, ME) and people ask me if I’d consider doing a full. I’ve also experienced a few bike crashes myself (been hit by cars twice, the first one was actually a garbage truck). It definitely makes training extra tough and sometimes scary. But nothing is as tough or scary as what children go through fighting diseases. Congrats on your personal acheivement and all the great work you are doing for Lily. It makes the accomplishment so much more meaningful! Way to go!
Alicia
Dear Alicia,
I am age 70 and diagnosed with Pompe’s at age 48. What n earth is it that makes you think pompe’ is tough and scary? I have people call me brave and all sorts f nice stuff that I am oblivious to. If you can’t walk, get a wheelchair. Nothing brave about that. Actually if you want a good laugh: I spent 25 years as a registered nurse (loved labor and delivery) and last as a supervisor.
The absolutely biggest trauma I went through emotionally was having to ask somebody to open a door for me!!!! Fears—most of them disappeared when Lumizyme was created. I am now on welfare in a nursing home in an MDA supplied “Porsche/cadillac” (“Action” brand) wheelchair with a tilt-in-space and gel cushion to keep my tush comfy 18 hours a day. (Yes, I hate bed.) My biggest remaining problem is having to literally beg for things I genuinely need and my $40.00 per month does not cover them all. Thanks to David Hamlin (UPF) and you guys for helping me over those little humiliations. Some days I actually laugh and many days I am happy in spite of everything. You have no idea how very important little things are. I have had to literally beg for whole wheat bread to eat (yeah I know god gives me daily bread too) but y’all are instrumental in my having the energy to ask.
Now go pat yourself on the back and give yourself a huge imaginary hug and kiss on the cheek, which is what this kinesthetic would like to do. Imagine the very best hug you ever had and the very best imaginable kiss on the cheek and consider that my gift of thanks to you. I love y’all. And the next time a real one comes to you unexpectedly, it is my thoughts creating your temporary reality just like you have created my fine reality. Gracias, Danke, Blessings: Love, bobbie jeanne