Be Zachary's Light

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Thank you for your interest in this little warrior's story.  I would like to introduce you to Zachary Edward Muller born in January 2005.  Zachary was born with a rare autosomal dominant congenital disorder, Treacher Collins Syndrome. 

During pregnancy, his mother and father were unaware that their bundle of joy had any development issues, much less what they were about to face.  Upon Zachary’s arrival, the new parents were immediately aware that there were complications, and had to endure multiple days of testing.  After 6 weeks in the NICU, little Zachary had his first surgery- the placement of his G-tube (feeding tube).  Zachary’s other issues included a small lower jaw, lack of cheek bones, a small airway along with a few other craniofacial abnormalities.  Additionally, the non-development of external ears and ear canals; the reason he is also deaf.  Since his birth, Barbara and Richard have been saving for Zachary’s future, knowing Zachary would have extensive medical procedures throughout his childhood, and well into his early life.  

In 2011, the family made several trips to Los Angeles to see a doctor (the only doctor currently who could safely do this) who pioneered a procedure to give children external ears.  Zachary was a candidate for this procedure, but not for receiving ear canals which would have given him natural hearing.  The family proceeded with the process to give Zachary actual ears.  In 2012, this necessitated multiple trips from Maryland to Los Angeles California with three different surgeries over the course of that year.  Several more journeys were made in 2013 to have eye surgery and revisions to his ears.  The amazing surgical team who performed these surgeries do not participate with any insurance plan, so the family’s out of pocket expense for these procedures exceeded $250,000.00; this included airfare, lodging and medical expenses.  For Zachary to hear, he wears an incredibly specialized hearing aid.  These are also not covered under insurance.  Each of Zachary’s hearing devices cost $4,300.00; the family just needed to replace one of them.

Last year, Zachary had a sleep study performed.  This came to the terrifying determination that his sleep apnea is now severe and could be life threating.  What this means for Zachary was that he was again in need of immediate surgery, this time for his jaw, he needed a procedure called jaw distraction (cut his jaw and expand it) to open up his tiny airway so he can comfortably breath continuously at night.  Due to his unique facial structure, a special type of expansion device needs to be used for this procedure.  The pioneer medical specialist of the needed device, is also in California.  Lucille Packard Children’s Hospital performed the first surgery.  As with all other surgeries, this doctor unfortunately also does not participate in any insurance plans.  The family’s out of pocket expenses, for just the first surgery, with him were significant (estimated to be $30,000 for just the surgeon).  This jaw surgery consists of two surgeries; one was performed in December 2014, the next is scheduled for August 2015.  The next surgery cost is still undetermined, but estimated around $20,000. 

Even though the family has scrimped and saved, resourced and tried to gather the financial assets needed for their son's ongoing medical costs.  They have hit a financial wall and need the community’s help.  

Any donation provided is relieving some of the financial pressure for this family.  

I am wondering if you would be willing to support Zachary in any way possible with his journey through this, and future medical procedures.  Please feel free to contact me for any information you may desire, or may need in attempt to support Zachary.     

You can also catch up with him on Facebook.


Thank You.


 

Donations

  • Dale & Lena Houser 
    • $200 
    • 52 mos
  • Anonymous 
    • $50 
    • 55 mos
  • Martha McLaughlin 
    • $50 
    • 56 mos
  • George Wallace 
    • $100 
    • 56 mos
  • Pat Smith 
    • $50 
    • 57 mos
See all

Organizer

Barbara Sloan Muller 
Organizer
Bel Alton, MD
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