Presley's going to UCLA!



Some of you may know that back in December of last year my daughter was diagnosed with a rare disease called Sturge Weber Symdrome; Sturge-Weber Syndrome (SWS) (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder caused by the GNAQ gene mutation.  It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye, endocrine and organ irregularities, as well as developmental disabilities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees and no two cases are the same. After finding out that the pediatrician that initially ordered MRIs for Presley when she was three months old never told me about the fact that he found a hyper dense mass in my daughters brain, i had to find out this past christmas from an intern doctor at Summerlin hospital that not only had had a rare disease and I was not told about it, but i was given a half diagnosis, not knowing anymore than that she had it and to find out any further information I'd have to follow up with a childerns nuerologist to get more details, I was then release on Christmas Eve with Presley and put on a waiting list for three months before seeing a doctor to get any answers. After meeting with this initial nuerologist, it was found out that there are NO specialists in Las Vegas and I am one of three families in the community that have SWS. After a long fight with the insurance company and having a lot of help from the Sturge Weber Foundation we finally got approval to go to UCLA in California to get Presley PROPERLY diagnosed with a specialist in SW, what type of SWS she has and how I can coordinate with physicians at home for her aftercare.  I have to work out more details with the Culinary Health Fund and my pediatrician, but it looks like Presley and I will be going in the next 30 days or so.  I ask from the bottom of my heart and as one parent to parpent, friend to friend, human being to human being, to please donate anything you can to help send Presley and I out to California. We need help with gas, lodging, food, and any other just incase something goes wrong funds, that insurance wont be covering. any and everything is greatly appreciated, and please let this go viral! I cant tell you how relieved I am that I am finally going to be able to get some answers about my daughters diagnosis. With her particular disease, I'm left in a state of forever unknown, and this is such a blessing and there will never be any words for how thankful I am for the people that have helped me to get to this point. Love you all from the bottom of my heart and Presleys too!

Donations

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  • Jeremy Guarino  
    • $100 
    • 43 mos
  • Joe Leos 
    • $100 
    • 43 mos
  • Deanna Beuth 
    • $50 
    • 43 mos
  • Ruel Payumo 
    • $50 
    • 43 mos
  • Monica Coleman 
    • $50 
    • 43 mos
See all

Organizer

Rikki Hunter 
Organizer
Arden, NV
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