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.
My mother heard your story today on good morning america and due to the fact that I have 9 month old twin boys, she called me at work to view the story online. Let me just say your daughters are beautiful and I can’t even come to understand the pain you must be going thru. I will keep your family in my prayers. Stay strong and GOLD BLESS your little angels.
You have my prayers! Wanted to suggest, if you haven’t done so already, that you look into the research of Dr. Joanna Budwig. You can get a quick overview of her work online, or in “How to Fight Cancer and Win.” Her work centers around essential fats, and since it sounds like Addi and Cassi’s disease is a degenerative disease resulting from problems in fat metabolism, you might be interested to see her work. I am recovering from cancer myself and try to follow her dietary recommendations. The recommendations are good for a number of other degenerative conditions as well. She has had remarkable results.
God bless you all. I will keep you in my prayers!
Sr. Anne Marie
A friend heard your story this morning on GMA and shared it with us. Our daughter, Riley, has Sandhoff Disease, another lysosomal disease. She was only expected to live to age 3. She is now 5 1/2 years old. We are thankful for each and every day we have with her. We hope and pray that a cure will be found for these terrible diseases that have taken over our children’s lives. Thank you for playing such an important role in that endeavor.
Regards,
Nicki Luce (Riley’s Mommy)
Coldwater, MI
http://www.caringbridge.org/visit/princessrileybear
I don’t know what to say except that my heart and prayers go out to you and your family. Your girls are beautiful! May God keep you strong.
Dear Hempel Family,
My sister heard about your story and called me immediately. We have twin girls who are 14 years old. Three years ago our daughter, Alex was stricken with a medical mystery.Alex was a pitcher on her softball team, loved to ride her snowmobile and horse. She was healthy her whole life. Today this mystery has left her completely paralyzed. She can’t move, talk, breathe, or eat. She moves the corner of her mouth to yes questions as she understands everything. Dr’s have given up on Alex. They said she would die, but we don’t know from what. We, too have become medical detectives in trying desperately to save her life. Alex’s time is becoming limited. Please know I understand more than you know what you are feeling. Your daughters are beautiful!!! Know your family will be added to our prayers. God’s Blessings from Iowa.
Lori, Jeff, Alex and Jaci Hermstad