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, my name is yancy from the Philippines.
i’ve seen the story of your daughters in the doctors,i was touched by your determination in the battle against the disease. i wish addi and cassi both faster recovery. i will include them in my prayers. God bless.
hello 🙂
i saw the twins’ episode in the doctors and can’t help but be moved by your husband and your courage on going through such difficult situation.thank you for sharing it to us.
your girls are very adorable!!!
i’ll include the twins, addi and cassi always in my daily prayer.
God bless your family more and the girls, may they have more years to celebrate life.
Hi my name is Lisa, I have a son name Nathaniel who has Hunter syndrome, it is x-linked enzyme deficiency for which their is no cure. He too is losing is brain function and his ability to walk is being compromised. He is a wonderful little boy that does not realize something is wrong with him. We do have a treatment it is an enzyme replacement called “elaprase” and it is helping with his physical ailments unfortunately not his brain.
My heart goes out to you as a mamma and I am so happy to hear that you have found cyclodextrin. Here’s to hope that this is the magic bullet.
It is really hard to watch our children’s health deteriorate an feel so helpless and out of control.
Please know that you are in our thoughts.
Russell Lisa Nathaniel and Chelsea
phaneufrussell@videotron.ca
I had seen your story in the doctors show and i was so touched on how you really taking care of your twins and the battle that both your husband doing. I’m only a teenager and common one so i wish to this wish I can help to have miracle in your twins. Just keep the battle don’t give up and maybe God has a reason for that matter. I know that you can through of it. Just be brave and keep your faith to God and he will guide both of you.
I had watched your story at the doctors.. Addi and Cassi’s situation touched me and made me cry.. I’m just a teen ager who has lots of love for kids.. I hope I can help the adorable twins.. I’m now trying to do a knitted hat to support your curecaps hat project.. My prayers are with your family, be brave on the journey, you may have experienced a lot of difficulties but always remember God is good.. Prayer is the most effective treatment..
God bless your family.. Be strong.. =)