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.
thanks so much for contacting us and asking us to join you in finding a cure for our buitifull children we would be more then happy to help and we are trying to get as much help as possibe i hope your little twins are ok the so cute send them there love from taylor lee x x x
Please know that my thoughts and prayers are with you this week. I love you.
From one set of parents to another, we offer prayers. Our son Joshua was diagnosed with a metabolic disorder, Mitochondrial Disease Complex I OXPHOS. Had it not been for our pediatrician having a child with this life threatening illness, our son never would have been diagnosed. This disease presents as so many different diseases, alzimers disease being one of them and many disease of “old age”. I don’t know if your doctors have looked at metabolic disorders as something underlying in your twins but it is worth mentioning. It must be tested in a live muscle biopsy to get the best results possible even though that is not full proof. They now think it may be as common as 1 in 50 people having this rather then the 1 in 4000 that they thought had it up until a few months ago when the girl who had a reaction to her vaccinations became public. Just as your daughters did not show symptoms until after an illness, our son did not either. Most doctors miss slight symptoms and even larger ones due to lack of knowledge or prior beliefs regarding this disease. We wish you the best of luck finding a cure and will lift you all in our prayers. God Bless you all!
Hello.
I’m a friend of Carla McGrew Jalbert. Carla and I have been the best of friends since the 2nd grade and she feels very strongly about your twins.
My heart absolutely breaks for you and your family. I don’t have much monies but would love to help you in any way possible. My phone number is 775-240-4189. Please feel free to contact me anytime. I will pray all of you.
Nancy Patton Opiniano
I found your story on Kate Kirk’s Caring Bridge Site. Kate is a little girl who was undergoing treatment for NP disease at Duke University while my niece, Zoe, was there. Kate is doing well, according to her website. Your story broke my heart as I sat here on this Monday morning and read the all too familiar story of the NP plight. My niece passed away almost 2 years ago after complications from a lung infection. She had undergone 2 stem cell transplants at Duke. The first failed, but the second transplant worked, and her tiny body had even begun to generate new healthy cells that contained the enzyme she could not make for herself. Although Zoë is gone, her fight continues through the NP children all over.
Addi and Cassi are beautiful girls who are truly blessed to have parents who are fighting so diligently for their lives. I hope and pray that God will use your research and efforts to send a more effective treatment & cure for your children and all the other Addi’s, Cassi’s and Zoe’s of the world. That is my wish for you!