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.
Best wishes from Poland
Agnieszka
i hope you find a cure fast and they are so cute
Dear Hugh and Chris, We are thinking of you and Addi and Cassi and hoping the new drug that they are going to start in January performs the miracle that will cure this horrible disease or at least slow it down until medical science finds a cure. You are both such wonderful parents…we are sending hugs your way for you and the girls.
Dear Hugh and Chris,
I received an email update from your website last week. I don’t know how I got on your list but am so glad that I did. My prayers go out to you and the girls. As difficult as I can only imagine this is for you all, I think this disease chose the wrong family to mess with. If anyone can stir up the funding and publicity to help fight this terrible disease it is the two of you. Keep up the fight!
My mom knits, does a lot of charitable work and belongs to a few knitting circles that do charitable work. I’ve forwarded CureCaps Hat Project information to her and hope that some hats will come your way.
With much love and many prayers,
Wendy
Chris:
I was just looking at the lovely website for your daughters. I can’t help but cry. I lost my 20 yrs old son to duchenne muscular dystrophy almost 7 yrs ago. It seems like yesterday. After reading about the relationship of your daughters’ disease and dmd I only hope like I have since learning of my son’s diagnosis at the age of 3 that a cure will be found and before it is to late for your beautiful children. I hope and pray that you will be spared of losing them the way I lost my son. If there is any help I can give you please let me know.
It is one of the hardest thing in the world to watch everyday your child losing what the once had and to know it will never return the way it was.
I hope your family had a wonderful Thanksgiving.
Good luck and contact me if you would like to.
I would love to hear from you.
Ginger