JP Honsinger is a normal 10 year old boy from the outside; he loves sports, fourwheeling, fishing, and rooting for his favorite sports teams. However, JP is living a life that is far from the average 10 year old’s. JP, the son of Donna and Jay Honsinger of Clifton Park, has been diagnosed with Niemann Pick Type C Disease.
Imagine sitting at home with your young child and noticing that he or she has slowly started to change. Things that were never a problem for your child are starting to become huge obstacles. When you ask them a question, they are unable to form a response without slurring their speech. The way they used to walk seems different, clumsy somehow. Your child has not been keeping up in class and is slowly losing the ability to function intellectually.
There must be a solution-right? There must be some sort of explanation for the way your child is behaving. You ask teachers, friends, and family for advice but no one seems to have an answer; the once bright and active young one is losing who he is. Finally, with no answers so far, you turn to a doctor for medical advice to shed some insight on this mystery. Your doctor tells you your child has a rare neurological disorder, so rare in fact that there have only been an estimated of 200 cases diagnosed worldwide.
The disease is called Niemann-Pick Type C or more commonly “childhood alzheimer’s.” Niemann-Pick Type C is a genetic pediatric neurodegenerative disorder that causes the nervous system to deteriorate over an extended period of time. The effected child will experience things like slurred speech, delayed motor development, increased chances for pyschological disorders, problems functioning intellectually, and at times seizures or liver failure. The average life expectancy for a child living with NPC1 is around 16 years old, with one half of patients dying before the age of 12.
Though there is currently no cure for Niemann-Pick Type C, there are treatments available, and there is so much hope. The abnormal gene “NPC1” (which causes the disease) was only discovered and identified in 1997- research being done is brand new! Researchers have begun intensive experiments to correct the cell changes seen in NPC. Think of all the progressions that have been made with illnesses like Cancer; we now know many causes, ways to prevent it, and effective treatments! We can do the same thing with Niemann-Pick Type C with your support!
A benefit for JP Honsinger will be held on November 18th, 5-8 PM at the Century House in Latham, New York. The event will feature live music by Sugar Pill, a Silent Auction with sports memorabilia, regional food, and craft beer tastings.
One of the organizers of the benefit and a family friend of the Honsinger’s, Christine Vogel, gave us the inside scoop on some of the prizes being auctioned off. Among them are a 46 inch LED T.V., a jersey signed by Justin Tuck of the New York Giants, a wine dinner valued at $1,500, a beer dinner from Druther’s valued at $2,000, and a variety of other sports memorabilia. For $30 you can come enjoy all of this and more; come support “JP’s team” of family and friends and know that you are helping find a cure!
Vogel, says “We aren’t stopping here. This will be an ongoing thing…we will be having pub crawls and more events to come…this is just the tip of the iceberg.”
JP did not ask for this, and he deserves the hope of a better tomorrow knowing that we are doing all we can to find a cure. The more money we raise, the more research we fund. The more research we fund, the more we will know about this rare disorder. With your support, we can continue to make strides in uncovering the complexities of Niemann-Pick Type C and prevent children like JP from suffering. Knowledge is power, and we will continue to fight for that power over this disease.
Please call Christine Vogel (518) 859-7728 or Maribeth Piche (518) 506-3968
To stay updated on local charity events and fundraisers check out the CliftonPark.com blog!