A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Friday, February 7, 2014

Rare Disease Month - Day 6

It's February.  That means it is time to focus on Rare Diseases.  You can read more about what I wrote about the past 2 years by clicking on the links to the right.

This year, I am focusing on different people with Niemann-Pick Disease, one of the 7000+ rare diseases, and the one that took the life of my only son.

Today I am focusing on a Isaiah, a 10 year old boy. Isaiah has had some ups and downs lately and is struggling with seizures and eating. His mom runs a hot dog stand in the summer to help cover costs that insurance won't cover.

There is a closed Facebook group where you can share love and support. The group was also created to provide a way for others to send him some love by sending him postcards. You can mail postcards to: Isaiah Adkins, 2216 Highlawn Ave, Ashland, KY 41101. The only condition is that you do NOT mention his diagnosis. You can see his wall here. Can we help him fill it up some more?


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