Where there’s a WILL, there’s a way!

The following blog post was written by my patient partner’s father, Chris,  who completed his first marathon this past year.  His son, Will, was born with the same rare disorder I have – Homocystinuria (HCU). 

My two 20 mile training runs for my first (and so far only) marathon both ended with intense pain in my toes and feet which started at around mile 18 or 19.  During my tapering the two weeks before race day, I tried desperately to find the magic combination of footwear that would prevent the pain on race day.  Should I wear my new shoes and thick socks?  My old shoes and thin socks?  I decided on my old shoes and two pairs of socks, but unfortunately I chose wrong (but I’m not sure there was a right).  At about mile 16 the pain in my toes and feet became too much and I had to start walking.  I knew that just about everyone who ever ran a marathon had some pain in their feet, but I was convinced that NO ONE had felt pain like THIS before.  After a bit of sulking as my 3:55 pacer group ran away from me, I started to run again.  I latched on to the 4:00 pacer group and felt a new surge of spirit and hope.  I was going to break my goal of 4 hours after all!  Alas, the pain returned in full force at about mile 21 and I was resigned to walking/running/walking/running until mile 25.5 when I pushed through and ran the rest of the way to a 4:12 finish.

 I myself do not have a rare disease, but my 7 year old son, Will, does.  Every marathoner has their motivators to get them through the pain when they have to dig deep and fight their way to the finish line.  Mine was Will.  I knew that as tired as I was and as much pain as I was in, there was no way that I was I was going to stop or give up.  It just never entered my mind.  Will, like all others who have rare a disease that does not yet have a cure, can’t just quit his Homocystinuria.  He can’t say he’s had enough and stop taking his medication or go off of his low protein diet.  He has to keep going despite the kids at school who wonder why he can’t eat the same foods that they do.  He has to keep going even though he hates the car rides to Philly for his blood draws at CHOP.  His determination and commitment helped me through that run.

 All of you with rare diseases and all of you running to support rare diseases are an inspiration and a motivation to me.  I wish you all well on your journeys and hope you always find the courage and determination to make it to your finish lines, whatever they may be.



Posted in Patient Stories
3 comments on “Where there’s a WILL, there’s a way!
  1. john hoxmeier says:

    We met Will when he was a baby and knew him as a toddler. Our two boys, Alex and Joe, ages 26 and 23 both have HCU. Discovered your page as part of the research. Thank you for what you are doing and good health to you.

  2. Millie says:

    My 9 yr.old granddaughter was just diagnosed with Homocystinuria. Is on meds, vitamins, can’t eat more than 32g of protein a day & gluten free. I feel so bad for her because of this change in her diet. I want to know if anyone can share some yummy recipes. We would appreciate it so much!

    • Kristin says:

      Hi Millie,

      Check out this website:


      They have lots of low protein recipes that are intended for kids and adults with metabolic disorders. They also have a Facebook page and lots of people post recipes and various low protein products they discover.

      There are also several support groups on Facebook for HCU. Here are three that I would recommend:

      Homocystinuria Support is available!!!
      HCU Network Austrailia Inc

      Hope this helps!

      ~ Kristin

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