Hugs for Heston

  Today is Heston’s 12 th birthday.  Those are words I never thought I would say.  Right from his diagnosis, when he was already regressing faster than many Sanfilippo kids, up to the last year, even the last month I didn’t believe this day would come.  And yet here we are.  So as per tradition, on this, Heston’s 12 th birthday, I am sharing a list of 12 things I am grateful for. So many who have supported us Whether it was a card or email of encouragement, a meal or gift card, we have been so thankful for so many who have come along side us in this journey.  We knew years ago that this would be a marathon, but even we didn’t realize how long things were going to draw out at the end like they are.  I know it has not been easy for many to sit in this space with us and for those of you who are still here, thank you.  Obviously we are most directly affected by the weight of this journey, but that doesn’t mean that it hasn’t been hard fo...