Cystinosis Research Foundation

my mom is friends with jenna and patrick's parents :) i love them dearly.. they inspire me so much <3 they changed my life..

My sister had this disease. I loved her dearly and she recently passed away. I honestly know what you are going through. She was the oldest surving patient. She had 2 kidney transplants and was about to have her 3rd. Please never give up hope. Its a hard disease that makes a person in sevre pain.

I love you both Chrissy and Jason and I am ALWAYS here for you if you need to talk....I am very proud of you two also....Isaiah 40:31
but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Chrissy and Jason, What a fabulous video. I think about Holt so often. I will post this to my facebook page because the word does need to get out. May God continue to give you strength and a cure.

What a great way to get the word out about this disease.
It's great to think there may be a cure for it one day.
Prayers to all of the children affected by this, and their families.