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, July 27, 2013

Looking back

I just looked back at some of my first blog entries.  Much has changed in the year or so since I started writing.  

In some ways I want to go back to those days.  In other ways I don't.  

Shortly we will be on the road again for this year's Niemann Pick conference. A time to learn a lot, hug many, make some new friends and say goodbye to those we lost since last year.

So much has changed yet so much has stayed the same.  The research continues but a clinical trial has started for a treatment.  More families are interacting on social media, sharing experiences and information. But we are still losing kids. And doctors are still not diagnosing it timely to help them enjoy their lives.

I do what I can.  Educating people who ask about by Persevere wristband.  Sharing our experience with Dan with other families. Trying to provide resources for other families. 

But it is an up hill battle when some in the medical community don't trust parents or patients to know information and be right.  We were incredibly lucky, in that Dan's pediatrician listened to our concerns and our wishes and helped us as much as he could.  But I see other families without that support. 

Especially in rare diseases, the patients or parents or primary caregivers become the experts.  Just because we don't have a medical degree doesn't mean we don't understand the medical world and test results and medical terminology. 

So where am I going with this? I don't really know.  I guess in some ways life is the same since I started writing, and in others it is different.  But life does go on, no matter what.

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