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.
DEAR CHRIS…………..YOUR DAUGHTERS ARE ABSOLUTELY GORGEOUS, AS A RETIRED NURSE I AM WONDERING IF YOU AND YOUR HUSBAND HAVE LOOKED INTO STEM CELL RESEARCH AS AN ALTERNATIVE. THIS IS THE FIRST TIME I HAVE EVER HEARD OF THIS, IT CERTAINLY IS FRIGHTENING, BUT I AM SO PROUD OF YOU FOR YOUR DETERMINATION FOR SOME KIND OF A CURE ..
MY PRAYERS ARE WITH YOU AND THE PRECIOUS GIRLS, KEEP UP YOUR GOOD WORK AND I AM GOING TO BE DOING SOME RESEARCH ON THIS DISEASE MYSELF.
LOVE AND PRAYERS,
ROBIN
Hi Chris and Hugh:
We saw the TV show The Doctors. It was so well done……and so sad but hopeful that something will happen….a miracle that will help Addi and Cassi. You are both such wonderful parents…they are so lucky to have you for parents. You have done everything you can to help them and help find a cure not just for them but everyone who is afflicted with this condition. Our thoughts are with you and we think positive thoughts for Addi and Cassi. It was great to be with you both last weekend….it is always our favorite weekend of the year.
Talk to you both soon.
Love, Elaine and Ed
Hello:
I watched the Drs. program on 9/22/2004. My heart was saddened to see the conditon of your two beautiful girls with their health as it is today. I hope a cure will come their way soon. I cannot give monetary donations at this time, due to having health expenses myself. But I am willing to donate time, by phone, internet, emailing people or whatever you think would be possible. I added the you tube to my space page. Please know that my heart is with you and your family.
I work in a facility that is mental health and Dementia. I have worked with Alzheimer’s and Dementia for 20 some years now. I had difficulty dealing with this horrid disease ripping away the minds of our elderly now to know the precious minds of someones children is being taken as well, I feel is so unfair.
Linda Burns
* Keep your heart open to dreams. For as long as there’s a dream, there is hope, and as long as there is hope, there is joy in living.*
Hi Chris,
I saw you, your husband and your beautiful girls on The Doctors yesterday. I left a message at your house, but I thought I’d also email you some information. You may already have this information, but it never hurts.
My daughter had recently been tested for some lysosomal storage disorders. She did not have any of them, but several people in my husbands family do. There is a company called Genzyme. They research and are finding some treatments. They have a website: genzyme.com. I do believe they have done/are doing research for treatments for NP type C.
I hope this helps.
Wendy Sigel
I pray you get the strength to fight for your girls. They will need you to fight for them.
SEE as many doctors as humanly possible. Because what one doesn’t know there is one out there that does.
Good luck and they depend on you to do the research.
Robin from Virginia (am walking without pain and not in a wheel chair thanks to many alternative doctors)