Sanfilippo is weighing me down tonight.  Like a wave, the reality of what we are facing has come over me and I am finding it difficult to breathe.  I just read about a fellow MPS mom whose daughter is in her final days.  It is so painful to read her story, knowing it will one day be mine.  I cannot bear the thought of watching my babies succumb to this horrible disease.  Losing not one, but two children to Sanfilippo.  Going through the unimaginable, only to know I will go through it all over again.

I am not a mother who has given up hope.  I am a mother wresting with reality - wondering if a treatment is going to arrive in time to help Waverly & Oliver.

Can't.  Breathe.


Kristy said…
I don't have words...but I just want you to know that I am praying for you right at this very moment.
Carrie said…
I know exactly how you feel. I could have written what you just did, as I am dealing with those emotions exactly. Just a different disease community.

If you want to talk to another mom going through a very similar situation, I'm here for you.

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