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Boys Going Blind Bucketlist

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Meet my nephews, Levi (15) and Max (13). They are respectful, responsible, well mannered, chivalrous, bright, musically and artistically talented brothers who have been raised with strong Biblical morals and principals.  In September 2015, it was realized that they have a rare, debilitating and ultimately fatal disorder called Wolfram Syndrome.  The characteristics of this are Type 1 Diabetes, followed by Optic Nerve Atrophy, Deafness and lastly Diabetes Insipidus.

At the tender age of 5, Levi was diagnosed with Type I diabetes causing him to stick his fingers 5+ times a day and gets insulin injections 4xs a day.  When his younger brother Max turned 7, he too was diagnosed with Type I diabetes, requiring the same treatment. 

Then Levi began to gradually lose his hearing.  When Levi began 3rd grade it became necessary for him to wear hearing aids. As in other aspects of his life, his younger brother followed in his footsteps and needed hearing aids when he began 4th grade. Rather than feeling sorry for themselves, they were thankful they could now hear sounds they never knew they were missing out on.  

Then in February 2011, their health took a nose dive.  Max was diagnosed with Optic Nerve Atrophy). His optic nerve is dying and there is no known cure or procedure to reverse or heal it. His vision has deteriorated to 20/500 and to be as independent as possible, he uses the guidance of a white cane. Levi was also diagnosed with the same condition, but thankfully his progression has not been as aggressive. His vision is at 20/125. Even so, being the big brother, he takes the lead in helping his younger brother a lot by leading him in public places and reading him his school work. As daunting as their conditions are, the boys have kept each other’s spirits up in knowing they are dealing with everything together. 

As optimistic and hopeful as they are, because of Wolfram Syndrome, they should both be blind within the next 5 years and expect kidney failure in their early twenties.  Sadly, no one with this syndrome has lived past the age of 30. Which is why...

 
We are trying to help these boys fulfill a dream of theirs to send them and their family of 6 on a roadtrip to see the most they can! These are two vibrant and brave teenage boys who want to see life for themselves. Together they came up with a 3 week roadtrip starting from home in El Paso heading west and crossing the U.S.. Their focus is to enjoy nature's beauty and some of mankind's wonders while spending time with their parents and baby brother and sister. The itinerary includes: The Grand Canyon, the Hoover Dam, Las Vegas, Long Beach, Sequoia National Park, San Francisco (Golden Gate Bridge), Springfield Or. (Simpsons Museum –their favorite show), Yellowstone National Park (Old Faithful), Mt. Rushmore, Chicago, Niagara Falls (stopping along the way to see 3 of the Great Lakes), Patterson & Wallkill, NY (farms, printery and headquarters of Jehovah's Witnesses), New York City (to see and eat up everything), Philadelphia (Liberty Bell & climb the steps from Rocky), Washington D.C. (National Mall, monuments and museums), Nashville (Johnny Cash museum), Memphis (Graceland), St. Louis (Gateway Arch & meet with leading researcher of WS), back to Dallas (to actualize one of their biggest dreams to see the Dallas Cowboys stadium), Austin, then home. There is so much more they wish they could see and do, but in order to be reasonable in our budget of time and expenses, they chose these cities and stops as their wish list.

This is where we need your help. We have calculated hotel stays, food, entrance fees, fuel, car rental and other expenditures... and we need to come up with $15,000 to send these amazing boys on this trip. We will contribute all we can and we understand times are hard for everyone. Any contributions would be greatly appreciated, as would any re-postings and forwardings of this link. Levi and Max will have access to this account and be able to update/respond to any comments or questions left. Also, we are open to suggestions when it comes to our itinerary if any of you friends have any ideas. Thank you very very much. 

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Donations 

  • Doris Foix
    • $30 
    • 7 yrs
  • Bernal Family
    • $500 (Offline)
    • 8 yrs
  • Jeff Keckley
    • $5,001 (Offline)
    • 8 yrs
  • Vicky Moreno
    • $400 (Offline)
    • 8 yrs
  • Arturo and Lydia Espinoza
    • $150 (Offline)
    • 8 yrs
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Organizer

Heather Duenez
Organizer
El Paso, TX

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