I’ve had so much support and visitors following Hannah’s story, that I felt it would be important to share the struggles and stories of other parents with children with rare diseases that most of you have not heard of. So every Friday, I’m going to highlight another special child like Hannah.

Josslyn has been diagnosed with is called Autoimmune Lymphofroliferative Syndrome (ALPS). Basically, she has anti-bodies that are killing all of her good blood cells instead of killing infections. Josslyn has been admitted many times because her body doesn’t fight infections very well.

Josslyn’s mom has to weigh Josslyn at home tomorrow morning. If she loses any more weight she has to be admitted to the hospital, get her feeding tube placed again, and be under close observation there until Monday, then she will be transferred to Childrens to be admitted so her GI team can look at her.

Please visit Lindsey and Josslyn at http://www.caringbridge.org/visit/josslynfrost.

I’ve had so much support and visitors following Hannah’s story, that I felt it would be important to share the struggles and stories of other parents with children with rare diseases that most of you have not heard of. So every Friday, I’m going to highlight another special child like Hannah.

Addi and Cassi Hempel are twin 5-year-old girls and both have Niemann Pick type C. Their mom, Chris, who I call the NPC Supermom, was one of my biggest strengths of support and advocacy since NPC was placed on the table for Hannah. She reached out to me and offered so much wonderful advice, and even with the Gaucher’s diagnosis, she is still there offering her expertise. She is a TRUE advocate. What she has done for the research of NPC is awe-inspiring, and I can only hope to live up to her gusto and drive to fight.

Most recently, she is trying to get FDA approval for a brand new possible treatment for NPC. On paper, it makes perfect sense! She is willing to try it with her girls, I just hope that FDA gives her the chance to try and save their lives. They are beautiful little girls.

Please take a moment to visit Addi and Cassi and offer your support and prayers and peruse her site. To say it is a wealth of information for NPC is putting it mildly. Niemann Pick type C is a devasting and horrific disease, and after having lived with that as the lead diagnosis for almost two months, I will continue to fight for these very special children.

Addi and Cassi.

If you know of another family with a child with a rare life-threatening or life-limiting condition, please email their blog/website info at the “contact” button above. 

** To those of you with blogs, PLEASE highlight these children in your blogs with me each Friday either offering a link to their story on my site or by copying the information and posting directly on yours.  Or if you know of another parent with a blog for their child, you can highlight them.  We bloggers CAN make a difference!