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.