Rebekah Monk

My heartache comes from being told my 7 year old daughter has a rare genetic disorder called Sanfilippo Syndrome, that is terminal with no treatment or cause. She is the light of my world who brings so much joy to many, but it’s incredibly painful watching her miss out on so much, never learning many skills she should, and seeing her regress. We support her and manage all her needs, but’s it not stopping the decline, and bringing back the losses that the illness has caused. I know I will eventually lose her long, which will inevitably break me. But I focus on the impact she has on my life, my husbands, her siblings, extended family and friends. For me sadly it’s not about having Hope, but living in the moment with her, for the time I have her with me.