April 7, 2011 at 8:39 a.m.
The quest for good health can be a lonely, difficult experience, and many are left feeling as though the inside of a clinic is as big as your world is gonna get. So-- to all the Chisago Lakes community members who attended or contributed March 26 to the Bartz Family and NF1 Research Fundraiser, Zack's grandfather sends a huge thank you on behalf of Zachary's extended family.
It's reassuring to know you are not alone, Zachary's mother adds, in a posting on their caringbridge.org site.
Harvey Bartz rold the County Press that the attendance and support displayed two weekends ago at the Lindstrom Community Center reminds him of small towns in Iowa where he grew up. He said, "...when someone had a problem everyone rallied around to help...your community has retained these values. It was beautiful to see and inspiring to experience."
Grampa Bartz apologized for having insufficient space, saying, "Our only regret is that we had to turn some people away...we were running out of food...next year we'll find a bigger hall."
After expenses the Lindstrom benefit probably netted about $20,000.
This gets added to $50,000 already raised for the Zachary NF Research Fund. See www. mmf.umn.edu/giveto/zachary.
Earnings from investing will allow the family to contribute thousands of dollars annually to NF research at the University of Minnesota.
Both sets of Zachary's grandparents started the fund within the Minnesota Medical Foundation to support NF research already underway at the university. Dr. David Largaespada and his team get unending praise and positive reviews for their work, said Bartz.
He shared a little story about when he brought Zachary to the lab "to work" one time, and he fed the fish and researchers warmly welcomed Zachary. "They were reminded why they're doing what they're doing."
Grandpa Bartz said it was really great of Largaespada and Zachary's physician Dr. Christopher Moertel to make a presentation on the disorder at the benefit event and for just being "highly competent and loving caregivers."
NF can be inherited or not, it's occurrence is about 50-50. With no history of this in the family, Zachary's diagnosis was totally unexpected. His mother noticed some discoloration of Zachary's skin and thought it was just birthmarks darkening, but after tests it was determined they were telltale "cafe au lait spots" associated with this, and he did indeed have NF1. (There are two forms.)
Zachary's particular challenge presented itself when he was just 19-months-old. He's endured years of chemo therapy, surgery and other treatments and medications to eliminate tumors that result from NF. He has become blind in one eye, his grandfather explained, but the hope is that a recent daily radiation series has been able to reduce tumors behind the eye for some lasting results.
Zachary is scheduled for an MRI later in April.
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