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.
Hello, i have just watched your gorgous girls on a episode of the doctors in Australia, with a 4 yr old little girl of my own it broke my heart. Please know that we will prey that you get your miracle.
I have two sets of twin sisters, and if they were struck down with such a disease I don’t know how my family would have reacted, but your family is a pinnacle of resilience, and I certainly would hope that we would be as strong as your family.
Good luck in finding a cure.
My heart and wishes go to your whole family.
Hi, the drs aired your episode here in australia today and i just wanted to say that i hope you get your miracle. i was a very hard episode to watch as i have kids too, and i know that i would also be devestated if my child was diagnosed with anything serious or fatal. as parents it is the hardest thing in the world to watch your child suffer knowing that you can’t do anything. i won’t pretend to understand your situation, as it would be harder than any of us could imagine, but i give you my best wishes. life just isnt fair sometimes. i commend you on your openess about all this in the hopes you can help others as well.
Have you tried diflucan as an antifungal? It has worked well for our guys. You can easily get a script for this. This works to kill off the fungi and yeast in the body. You really have to get them on a strict whole foods no sugar organic diet. IT WORKS. The girls crave sweets because that is what the fungi feed on. You have to starve the fungi to kill them off. I know the J&J drug will work too but you can do this with diet and you will see IMMEDIATE improvements. At the very least, get rid of all the processed sugary foods (cereal, candy etc) I know they can get better. Don’t depend too much on the pharma company to help. You can really get them much better with diet alone. Lessing the toxic burden on them too will work and supplements will help make the recovery for the long haul. We use B12 shots, a B complex, carnitine, co Q10, selenium, omega 3s, enzymes, probiotics, and hyperbaric oxygen treatment.
I would send you a list of things we did for our twins. Today at 5 years of age (only 18 months of treatment), they are out skating at hockey practise. They are relearning all their songs, colors, numbers, alphabet, can write their names, go potty, and look pretty typical. They run, laugh and play and attend regular kindergarten.