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.

Saturday, August 25, 2012

Rare Diseases

Rare diseases are just that - rare. I think the official definition is less than 200,000 cases in the USA. Do you know how many that really means? Over 7,000! The searchable list is here: http://rarediseases.info.nih.gov/RareDiseaseList.aspx?PageID=1

In my little area of the world there are 3: Dan had Niemann-Pick; another little girl, Kaitlin, has Batten Disease, also known as late infantile neuronal ceroid lipofuscinosis (LINCL), (see her blog here: http://comingtogetherforkaitlin.blogspot.com/); and a third young woman, Emily, has Cerebro Costo Mandibular Syndrome (see her blog here: http://emilysjourney94.weebly.com/index.html). Each is quite different.

Just on the heels of our trip to Nashville, TN for the Niemann Pick Conference (more in another post), Kaitlin's mom had her 4th annual benefit for her daughter. So we went. And I now proudly wear two rubber bracelets - one for NNPDF and one for NCL.

I met Becky, Kaitlin's mom, about a year ago, shortly after Dan died. I was getting rid of some supplies and posted them on a Facebook group that lets people share unused, excess supplies for the cost of shipping. Becky responded to a post and when we realized that we didn't live to far from each other we decided to actually meet. Since then we have kept in regular contact and totally understand what the other is going through.

I have not met Emily in person yet, but I'm sure I have seen her around town....especially since we live in the same school district. I met Emily through another Facebook group related to those who have rare diseases.


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