Make A Wish For Addi and Cassi Today
Your support and encouragement helps us get through each day as we fight our battle against Niemann Pick Type C, the “Childhood Alzheimer’s.” We read all messages posted to our family and while we may not be able to respond to each message, your messages are very touching. Thank you to everyone around the world who has posted on our Wishes Board.
First, of all I would like to thank you guys for all of your strength both for yourselves and your two beautiful daughters!!! People don’t understand how hard it is to have a rare disease, or have a family member who has a rare disease!! Their is no chat rooms, ribbions, walk for a cure, or really anyone you can relate with when you have a rare disease. I am in the same boat but a different one than your daughters. I have a rare form of degenerative arthritis called DISH disease or Diffuse Idiopathic Skeletal Hyperostosis. I was diagnosed at age 31 after having a life changing car accident. I went through so much pain after my accident, I don’t know how I didn’t have a heart atack. Finally, I met with a great neurosurgeon who said I was a potential Christopher Reves. Basically he stated my spinal cord was compressed by three discs in my cervical spine, so he later preformed a successful sugery called a cervical discetomy on two dics and he shaved down some bone spurs for me as well. After the sugery for about three days I felt great, like I was cured. Then about three days later, I was in so much pain in my thoratic spine I could barely move. I went to the doctors office complaining of this awful pain and this is when my doctor told me I had DISH. He called me a drug addict because he believed I was addicted to cocaine. I guess he had seen studies that people who used cocaine are more likely to have DISH at an early age, so basically he told me to do my reseach on the internet and have a nice life. It took me forever to even find a doctor to treat me, or even believe that I had DISH. DISH is a disease that happens to 70 year old men not 31 year old females with an athletic body. My doctor is very understanding but then again she tells me she doesn’t know what’s going to happen to me. I am one of the youngest known patients with DISH, so basically my doctor said the only exercise she can clear me for is to walk. No skiing, biking, running, roller coasters, nothing that could potentially snap one of my calsifying ligiments or hurt my spine. In fact, people with my disease often break their spine without even knowing they had an injury. So far I have had two DISH related surgeries and I rely on very expensive pain killers, muscle relaxers, and anti-inflamatories. I quit my job as a fourth grade teacher and opened my own business that I no longer have the ability to go to anymore. My husband runs the entire retial store himself, and he is not well either he has been diabetic since the age of three. We want to have children but my menstral cycle has just stopped for the last year, which is disease related. On top of it all we have no health insurance!! I am trying to get disability but who knows! The neck surgery I spoke of was $48,000, the car accident paid for that one, but just think if I need another surgery!! So I just wanted to thank god for wonderful people like yourselves who have the energy and are introducing the rest of the world to rare diseases and how hard and confusing they are for the people who have a rare disease and the ones who love them!!! I wish that the center for rare diseases didn’t just list our diseases, but actually brought us some help! I will pray for your daughters as I pray for all of my loved ones because you really touched my heart!!!!!!!!!!!!!!!
I have just visted your website and watched the DRs. Video your girls are like a mirror image of my nephew Calum who also has NPC and is is just over 4 yrs old. My heart goes out to you. Caroline
Hempel Family,
Your story is almost exactly the same as ours. We have 3 boys, 4, 2 1/2, and 8 months. We have just found out that our two oldest have NP-C. Your story is what is keeping me going some days. Althought my boys have had symptoms since they were born we have not seen neurological deteriation yet. We also will see Dr. Patterson in two weeks. If you have any advice it is much appreciated!
Take care of those beautiful girls!
The Stults Family
I saw your “ReThink IT – Dear Mr. President, please…” video on youtube and from it watched your other videos I have shared your story with my friends and family. Your story has helped me decide what to do with my life I have been struggling for a few years with what to do, I am 20 and was in need of a kick, you guys gave me that kick. I have at last decided to go into the medical field I have always had a large interest in the medical field and I know now that I will really enjoy helping those I meet and working with wonderful people like you. I wish you luck in your travels and will pray for you always.
Your Friend,
-Robert
I seen you on the show the doctors sorry to hear about your sweet lil angels i hope that doctor can come up with something to help them. I also have a lil girl she 2 and she has asthma to me that is hard to deal with sometimes but we get through its together as a family she also had to wear a helmet to fix the shape of her head but then agin we made it thats just the smal things we have had to deal with you have alot on your plate hope everything works out i will pray for you guys