John Michael's fight against NPC

Our son John Michael was diagnosed with Niemann Pick Type C almost 6 years ago.  NPC is an extremely rare degenerative neurological disease that has no known cure and is ultimately fatal. We were absolutely devastated when we got the diagnosis (it took 2 1/2 years to diagnose). Life as we knew it would never be the same, John would never be the same. There's no way to truly explain what he's been through, what we as a family have been through. All I can say is watching our son lose more function daily is the most painful thing we have ever endured. We saw so many specialists and they all just offered their condolences and said if we need anything to let them know. We were never offered any hope. They didn't know how to help. Not a single doctor had ever treated a person with NPC. So, I started to try, read everything I could, reached out to other parents, joined facebook groups and tried to keep up with everything on the NPC website. I have fought for him every day, and I have waited. Waited for a miracle, for someone to give us hope. I've prayed for answers, for a cure, for someone to offer us something other than an "I'm sorry." 
     Then this trial for a new medication started, cyclodextrin. I watched, I read, I listened and I waited. I waited to see if it would help. If, by some miracle there was hope. I watched these children go through treatment, I spoke with parents and I did as much research on my own as I could. Then it happened. I saw it, there was hope! I watched a video from Rush Medical Center in Chicago and saw that the kids that have been receiving cyclodextrin were doing well! Not only responding well to treatment with no major side effects, but actually showing improvement! Improved symptoms! Swallowing better, walking and talking better! I saw a miracle! So, I made some phone calls and sent some emails. My husband wrote a letter to Rush. Within a few days Dr. Kravis called us and scheduled us to come to Chicago. It's surreal, to see that this is happening. That our prayers have been answered. There are people that can offer hope. A physician that has dedicated her life to these kids, to NPC. She is amazing and willing to help us get John treatment!
     Sunday, I will be taking John back to Chicago for further testing and for his very first TREATMENT of cyclodextrin. We have treatment!!! I still can't believe it! We have hope, true hope, for the first time in 8 years. The hardest part about this is asking for help. But, John Michael needs it, and he is worth everything. So, I am asking, anyone and everyone to help. Please, help us get our son to Chicago for treatment. He must go every 2 weeks for the infusion. The cost of travel and out of state medical expenses will be great. I am hoping to get treatment to Michigan (my next big fight) as soon as possible, but it will take time. So, we will be traveling every 2 weeks for now. The treatment is for the remainder of John's life, which I pray is a very, very long time!
  • Rick Tewilliager 
    • $100 
    • 31 mos
  • Joni McCormick 
    • $50 
    • 54 mos
  • Eileen Dingman-Kilian 
    • $100 
    • 55 mos
  • Jeff Wale 
    • $100 
    • 56 mos
  • Kathy Bertram 
    • $50 
    • 57 mos
See all


Amy Tewilliager Whaley 
Troy, MI