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.
Hi, I saw your beautiful girls on Dateline tonight, you are both to be commended for putting such dedication and research into finding a suitable treatment for your child. The amount of scientific knowledge you must have accumulate is amazing. I hope this sugar works wonders for your children and heals them of their disease. Way to be an advocate for your child’s health, and not taking ‘no’ for an answer.
Heard your story tonight on Dateline. What precious girls and a precious family. My heart goes out to you and I will keep your family in my prayers.
Noel
After watching your story on dateline NBC tonight I am amazed and inspired by your strength and perseverance through such a tough situation. When our daughter Alexxis was born we found out through newborn screening that she had a rare genetic disorder called MCAD. Basically she is unable to metabolize fats. Luckily for us there has already been research done out there for us so we had a handful of resources and an excellent doctor to work with. My heart goes out to you and your family and I wish only best for you . I really hope this treatment works for them. Enjoy every moment and never give up hope. You will be in our hopes and prayers.
The Horner Family
Dear Bill,
After finding you on facebook months ago I went to the girl’s website and it broke my heart to have an old close college buddy facing a crisis like this and with such beautiful little girls. I admire you and your wife and your undying devotion and strength. Just saw the dateline story and hope that the protocol helps the girls. I so much better understand your plight as my 18 year old son who just graduated was diagnosised in March with a rare bone cancer (about 150 kids a year are diagnosed) we luckily live near John Hopkins and are on a journey for a cure for PJ. Luckily there is a protocol and it was caught before it metasized. Our new focus is on learning all we need to know rather on focusing on sending him off to college which will be deferred for a year. I hope one day the two of you are sending Addi and Cassi off to college too. With lots of love and continued prayers, Beth Kohn Sluder
I wish your family the best of luck!!!