Comments on: Make A Wish For Addi and Cassi Today

By: Debbie Earl

Debbie Earl — Fri, 03 Feb 2012 04:54:32 +0000

Just wanted to say I am thinking of your girls. May god bless them!

By: Kirsty MacMillan

Kirsty MacMillan — Tue, 24 Jan 2012 21:43:53 +0000

I am a 23 year old girl and i live half way around the world in dundee scotland. Your two little girls are so brave and are a true inspration to everyone who has this condition.They have trueley touched my heart. They contine to have my love ans support. kirsty xx

By: Kay

Kay — Tue, 24 Jan 2012 15:36:16 +0000

I just watched a programme on you and the girls in Austria. My heart really goes out to you and the family. Being parents you both are doing a marvellous job. Keep well and I am sure they will get well. They are just such awesome girls and so beautiful. God Bless!!

By: Sue P.

Sue P. — Sat, 21 Jan 2012 02:22:02 +0000

My heart goes out to everyone with a rare disease. Our neighbor’s son has Niemann Pick Type C, and it is heart-wrenching to see what he is going through. I hope and pray for a cure for this and all the other mysterious diseases.
Is there a standardized pin or bracelet we can wear to honor those who have rare diseases? I like the “ribbon/jean” design on the website, and I would love to buy a bulk of them to give to those around me to raise awareness.
Thank you for reading this, and God Bless….

By: Chris Hempel

Chris Hempel — Fri, 23 Dec 2011 04:15:22 +0000

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