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Surviving with Proteus Syndrome

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My name is Angie Richards.  Eight years ago I met and fell in love with an extraordinary man.  We got married on May 4th 2013.  My husband Brian has a very rare disease called Proteus Syndrome, the same disease as Joseph Merrick better known as the Elephant Man.  Despite such a rare disease, I wasn't scared.  I was raised to care about what is on the inside and to judge someone on who they are in thier soul and not what they physically look like (though I find Brian EXTREMELY handsome).  He is 34 years old and has had 42 surgeries that he needed to function,  and there are more to come.  Even with all of his trials, he loves me and my daughter unconditionally. And we love him the same way.  He is every single mothers dream.  From day one he has loved Samantha as his own and has treated me like a woman can only dream of.
  With each surgery comes a price tag.  He had a lung removed in 2015 and the cost of that surgery was $250k!!  This does not include the cost for us to go to Denver to get the surgery and to stay for a month while he recovered in the hospital.  We struggle every day to save for a home, but medical bills and a single income make it extremely difficult.
  As he grows older things continue to change and he is gradually getting worse. As a result we need a larger, more handicapped accessible home.  We currently own a home in Dover but the small rooms, small bathroom, narrow hallways, and numerous steps to get in and out of the house are not conducive to him getting around.  
  As his health changes so does his ability to work.  Some days he's fantastic, other days, not so much.    I am putting up this page in hopes of getting help from those who can.  Every dollar can help us save for a home more accessible to my husband and give him a better quality of life.  


   If you cannot donate, please share this site to help us get the word out about our situation.
If you do not want to donate via a website please message me on my facebook page Here for an address.
  Thank you on behalf of myself and my family for making Brian's quality of life better.






 
 
 
 
 
 
 
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Donations 

  • Manuela Jockers
    • $50 
    • 4 yrs
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Organizer

Angie Richards
Organizer
Magnolia, DE

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