My story

I simply could not pass up this opportunity to participate in the "Walk Over ". With McArdle Disease, I suffered (and still suffer) through even the most basic physical activities, experiencing muscle fatigue and pain. At age four I distinctly recall lagging behind the rest of my soccer teammates as they jetted up field. At age six I remember trekking uphill to my best friend’s house. Though he lived ten houses away, I stopped for several breaks: sitting on the curb as my muscles slightly stiffened. Throughout middle school P.E. was a nightmare as my fatigue seemed to increase over the years. I began to bow out of activities while I stood on the sidelines, watching my classmates run.

These early years were filled with confusion. I received numerous misdiagnoses from local doctors as they claimed that I was simply “lazy” and “de-conditioned”. It finally took out of state visits to Dr. Ronald Haller in and later to Dr. Alfred Slonim in to confirm my diagnosis of McArdle Disease.

Despite my struggles I strived to stay active. Baseball was “my sport.” While I managed to adapt to the sport (with my muscles on mind in every play), running became increasingly strenuous and even dangerous as the bases progressively lengthened to 90 feet. Second-base became my sprinting limit. My competitive baseball career came to a “semi-glorious” exit when I knocked a line drive to the fence in right-center field. I rounded first base at full speed and despite pushing my arms and legs to the max, everything slowed rounding second. Heading into third-base as the ball came in from the relay, my slide resembled that of a stumble and fall. Hunched over, crippled with contractures from my legs, to my abdomen, to my arms, I then realized the gravity of my condition.

With McArdles patients “there is no gain with pain.” I am learning to live with McArdles: learning to be in tune with my body while not limiting myself.

Though I am participating in this month long walk for many personal reasons, walking for McArdles is on the forefront of my mind. The purpose of this walk is to bring awareness to this disorder and to create an informational DVD for McArdles patients: educating those who may have been handed little information on how to live with the disease. With this disorder, most patients are diagnosed as adults. Hopefully with this effort others with McArdles will be diagnosed earlier, thus preventing repetitive muscle damage and disability. I’d appreciate any support towards this worthwhile effort.

With thanks from ,

-Dan Chambers (age 18)

 

My charity

Association for Glycogen Storage Disease (UK) Ltd

Association for Glycogen Storage Disease (UK) Ltd

Charity Registration No. 1132271

Support group for people with glycogen storage diseases, very rare genetic disorders of metabolism, and their families. We offer: web site, newsletter, annual conference/workshops, promote understanding of and research into GSDs which are often disabling and life-limiting. http://www.agsd.org.uk

Donations 32

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Dan, I've heard a lot about you from your Dad. You are doing great!

Donation by Gary Hardenburg on 28/07/10

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Hi Dan,you are doing great,see you soon Charlton.

Donation by charlton thear on 27/07/10

£10.00

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Your awesome Dan. We have a lot of respect for you in taking on this challenge. Former Hawaii Ohana- The Smiths - Camden, Jillian, Barbara & Austin

Donation by Barbara Smith on 26/07/10

£20.00

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Hi Dan, We are praying for you and are glad to see you are having a wonderful time!

Donation by Cathy Hamm on 25/07/10

£10.00

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Great job, Dan! We hope you enjoy every minute of this journey. You are in our prayers. . . Candy and Kevin Bush

Donation by Candice Bush on 24/07/10

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Congratulations Dan! What an adventure, one that you'll never forget. Great going. Love, Aunt Di and Uncle Peter.

Donation by Diane Voigt on 24/07/10

£25.00

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Dan, What a great way to start the next stage of your life. We are behind you all the way. Love, Shelly, Hal, Stephen, Eric and Rachel.

Donation by shelly Jolles on 24/07/10

£25.00

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Dan, I'm so impressed with what you are accomplishing. You are amazing!

Donation by Yvonne DiCarlo on 24/07/10

£50.00

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Psalm 34:8 O taste and see that the LORD is good: blessed is the man that trusteth in him. Love, Uncle Chris

Donation by Christopher Chambers on 12/07/10

£25.00

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Go Dan! I'm very proud of you for doing this. Hang in there and can't wait to hear all about it when you get back!

Donation by Scott Gampel on 09/07/10

£25.00

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Enjoy the journey Dan! We're happy for you! Love, Uncle Mike & Aunt Kate

Donation by Michael Chambers on 06/07/10

£50.00

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Hi Dan! Your walk sounds so awesome have a great time. Brandon sends his best. The Buckley Family

Donation by Becky Buckley on 05/07/10

£25.00

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Dan...We are so proud of you. Our prayers are with you! Aloha, Neal, Jamie, Chelsea, Kaohu, and Kupono Detwiler

Donation by Neal & Jamie Detwiler on 05/07/10

£50.00

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Go Dan! The journey is the destination.

Donation by Tommy, Erika & Ryan Chambers on 04/07/10

£20.00

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too cool look'n good dan, geez, I can't even walk one mile without gagging, that I got to chose the image of a toaster made my day, love, cuz lucia

Donation by Lucia Ruta on 04/07/10

£50.00

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Dan, We are cheering and praying for you ! Love, Grandma and Grandpa Chambers

Donation by john chambers on 29/06/10

£75.00

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The walk sounds awesome. Keep a log for life long memories...and wear sensible shoes!

Donation by Hal Dick on 29/06/10

£50.00

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Fellow McArdlite!! See you in a couple of days...I look forward to trekking alongside you & Andrew :o) Hugs, Stacey

Donation by Stacey Reason on 28/06/10

£50.00

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Way to go Dan! I am so proud of you for conquering "your giant"! Cheryl Engle

Donation by Cheryl Engle on 28/06/10

£25.00

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Way to go Dan! I am so proud of you!!

Donation by Hilary Ward on 28/06/10

£25.00

Here's that elusive 'home run' Dan... knock it out of the ballpark! Good luck to you.

Donation by mike burgess on 27/06/10

£15.00

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Bon voyage Dan! The Fergusons

Donation by William Ferguson on 27/06/10

£30.00

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Way to go Dan! This will be just an amazing experience for you. We will be praying for you.

Donation by Debbie Rosenberger on 27/06/10

£50.00

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Heard about you from Andrew. Great news that you're taking part. It should be a fantastic experience - wish we could be doing it instead of driving!

Donation by Peter and Clive on 26/06/10

£100.00

+ £28.21 Gift Aid

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May God bless you on your journey Dan! The Boal Family

Donation by Kimberly Boal on 26/06/10

£20.00

Donation summary

  • * Online donations£1,273.63
  • Offline donations£0.00
  • Text donations£0.00
  • Total raised£1,273.63
  • Gift Aid£70.51

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