Although JP’s family is fortunate to have very good health care coverage, their friends have set up "JP’s Fund" as a safety net, in the event of unforeseeable medical and/or travel expenses down the road.
As you all know,JP loves to play any sport, as well as fish, four wheel with Dad and be the typical younger brother to his sister Mollie! JP’s team is made up of family and friends who want to help JP and others beat Niemann Pick. JP’s team is growing every day, and there is always room for more people to get on the roster! Please join the team today!
JP’s Team chose YouCaring and WePay as our donation partners because they are secure and reliable. They only collect a very small percentage of JP’s donations. JP’s team would like to inform you that your donations are not tax deductible but will be put to use to aid JP’s family with expenses that will arise.
Please do not hesitate to contact Karen Bobarakis at [email protected] or Heather Taggert at [email protected] if you have any questions. We would also love to add your pictures to JP’s Gallery, so pass them on to Karen!
About Niemann Pick Type C:
Niemann-Pick Type C (NPC) is a rare neuro-degenerative disease that primarily strikes children before or during adolescence. NPC is an inherited cholesterol metabolism disorder. One in every 150,000 children have NPC and over half of people with this disease will be diagnosed by the age of 10. Symptoms can include deterioration of memory and balance, lung and liver failure, delayed motor development, and seizures. The disease usually appears in early childhood, leading to neurological problems that there is no cure for at this time.
While there is not yet a specific treatment for NPC, supportive therapies are available. These include medications to control seizures, abnormal posturing of limbs, and tremors. Physical, speech, and occupational therapy are also used to help with daily functioning.
To hear a video from Mayo Clinic doctor, Marc Patterson, follow this link: http://www.youtube.com/watch?v=LKgQVz__-hM
This is going to be a tough road for JP and his family so please keep us in your prayers. We will update this site with stories, pictures and how JP is doing so please visit often.