BRODIE WAS DIAGNOSED WITH THE RARE AND TERMINAL GENETIC DISEASE KNOWN AS NIEMANN PICK TYPE C. THIS EVENT IS TO HELP RAISE MONEY AND HOPE FOR MEDICAL EXPENSES NOT COVERED BY INSURANCE AND TRAVEL COSTS FOR THE FAMILY.
WE ARE HAVING FOOD, 50/50, CHINESE AUCTION AND ENTERTAINMENT.
EVENT IS 21 & OVER
For those of you that don’t know us, we are Kaylee and Brandon and we are Brodie’s parents. We received horrible news yesterday about our 4 month old's health. He has been diagnosed with a rare genetic disease called Niemann Pick Type C. There are only 100 reported cases in the US. We are beyond scared for our little baby but we are willing to do anything and everything possible for our little fighter! This is NOT the news that we were hoping to get a week before Christmas! This is not only devastating news for his father, brother, and I, but it’s devastating for anyone that has ever experienced the love and happiness he shares!
With the disease being so rare there is no FDA approved treatment for it yet, but there are clinical trials that we are going to try and get him into but to do so we will have to travel to different states to the MAYO Clinics. Which means time off of work without pay, hotel stays, travel expenses, and non FDA approved drugs (insurance WONT cover).
We appreciate all of the love and support we have through this though time! If you’re unable to donate we just ask that you PLEASE PLEASE PLEASE share and pass this on if not for money but for awareness for a very rare and scary disease! Heres a link for information on the disease:
http://www.chp.edu/our-services/rare-disease-therapy/conditions-we-treat/niemann-pick-disease-type-c