Cystinosis is a rare, inherited, metabolic disease that is characterized by the abnormal accumulation of the amino acid cystine in each cell. The build-up of cystine in the cells slowly and eventually destroys all major organs of the body including the kidneys, liver, eyes, muscles, bone marrow, thyroid and brain. Although medication is available to control some of the symptoms of this insidious disease, Cystinosis remains incurable.

Sunday, September 23, 2007

They walked for Holt....they walked for a cure

At the approximate time of my last posting- our 18 year old high school senior next door neighbor came to our house, knocked on the door, pulled Chrissy and I aside and said- "I want to do a walk for Holt to raise money for a cure for Cystinosis". As with everything else we have been faced with here--we didn't know how to react...quite frankly, what do you say...other than ok? We looked at each other and said---ok...

Chrissy and I both were thinking the same thing---this is still early for us--we haven't yet figured out how to deal with all of this---we are still trying to make the adjustments in our lives that we have to in order to be able to deal with all of this---how in the world can we muster up the energy to put in the time and effort required for a fundraiser----we simply aren't ready and dont have any incremental emotions to spare...obviously we want to be able to make this a home run type of event but we just arent ready to put in the time to make it as such...let's send out a few emails to our friends and family and see if we can make it respectable...we thought that this was going to be a "nice" event--simple, small and nice.

Well she sure showed us---more than 150 people came out to walk more than 200 donated and as of now over $15,000 has been collected and apparently more is on the way. Donations came in from as far away as Japan---the kids two doors down emptied their piggy banks and brought in $38.00... a dear friend flew in from Jersey in the morning and flew home after it was over....he brought a check for 5k....a neighborhood kid gave her family massages and raised 40 bucks...the Doerings (the family who put on the event) bought everyone t-shirts----food---drinks--banners---brochures---my pop warner football kids came---my oldest friend (from the 3rd grade) came---people who work with my sister in law (whom i have never met) came--- i could go on and on---it was amazing. At the end of the day, the key takeaway is this- the kindness of the human spirit and the generosity of friends and strangers is remarkable.

All i can say is- thank you--I just wish i could say it in a way that made you all feel the way we feel now--- which i really cannot appropriately put into words.

Love-
Jason and Chrissy

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