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.
I want you to know you have another person praying for a miracle for your girls. I read your story in “good housekeeping” and it just broke my heart. I have 5 year old boy-girl twins and when they were one we thought our daughter may have a genetic disorder when she failed to hit milestones and for a little while even lost some skills. I started mentally preparing for the worst. Fortunately for her, therapy helped her to get past whatever was causing it and every day I look at her and i am so grateful for what we have compared to what could have been. When I read your story it really hit home because you are living in that horrific alternative every day and it is so unfair. Your daughters are so beautiful and you are amazing, amazing parents to devote yourselves to fighting for them and never giving up. There is a special place in heaven for people like you, please remember that as you fight every day against this horrible fate. I am crying for you as I type this and I will never forget your story. I will start donating to global genes.org to help families like you. Please remember you are a team and you are on the same side as you deal with this stress, and may god bless you and your beautiful daughters.