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.
Dear Addi and Cassi
I watched you story on doctors that was recently aired in the uk and you touched so much. I have three children of my own and my youngest daughter age 2 is quite sick with asthma and bronchitis. Your parents are such an insperation !!
Myself and my chidren will continue to follow your progress. we send you are prayers and love and hope the new treatment works.
Take care
all our love
Sarah, Jay, Charlie, and Jessica
p.s. a thousand kissess and hugs from us xxxxxxxx
p.s again we llive in south wales uk. If we can help promote anything let us know xxxx
Hi Sarah:
Thanks so much for your note — wow, amazing the story went all the way to Australia! Thanks for your kind words and support – it means so much to us.
Happy holiday’s!
Chris, Hugh, Addi and Cassi
Our3 year old daughter has generalized epilepsy and we have found it difficult to keep track of all her seizures and keep her medicated correctly, God bless your family…one day there will be a cure!!
Love from ohio
Hi Elizabeth:
Sorry to hear about your daughter and her seizures. I find these seizures so difficult to deal with in my twins — the only drug that has helped them has been Valproic Acid. We still get them daily — I pray some day for a cure for the brain to help people with seizure disorder.
Love back from Reno!
Keeping your family in our prayers that a cure is found. Your family is amazing.
Thanks for the prayers Debbie — we really appreciate it!
Dear Addi and Cassi and fam.
we wish and pray that the docters find a treatment….
Our son Pieter has also nieman pick type c
he is 15 years old and we know that he has nieman pick since january 2011
with love from Holland
fam. Hakvoort
Hi Hakvoort:
Thanks for your message. I am so sorry to hear about Pieter. Maybe you can look into the cyclodextrin treatments — there are lots of folks in the EU interested in moving something forward. Have you connected with Sue French?
Love back to you from Reno, NV, USA.
Chris
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