I love my Sanfilippo family. After almost 3 years of being in this exclusive circle, I have come to heavily rely on some of the other mothers who truly understand what I am going through. I have found a few moms whom I can call or email when I have had a terrible day, when I need advice, when I need to vent or when I need someone to pick me up. They are treasures.
Being a part of this group is difficult though. New families enter. As I hear their stories or read of their pain, I am immediately taken back to those first few months post diagnosis. As I have grown attached to other families, I see the changes in their children. I hurt right along with them as the disease progresses and new challenges are faced. And I have also watched other families anticipate the end of their child's life and grieve with their loss.
Another family's precious little girl is nearing the end of her life. Both she and her brother have Sanfilippo. Their story mimics ours in so many ways. I cannot help but look ahead a few years and know that I will soon be in those shoes.
I feel, at times, that I am in a waiting line; surrounded by other Sanfilippo families. All of us waiting for our moment to lose our child. Some families choose to avoid all contact with other families. I understand that perspective. I needed to reach out to other families. The day after Waverly was diagnosed, I was on the phone with other moms.
I know that there are movements toward finding a cure for Sanfilippo. We won the $250k grant to help fund gene therapy research. But in all actuality, it is most likely too late for my children. They will probably not benefit from the research. They will be too old and the disease too advanced to enter the human trials. This will not stop me from fighting for a cure. I want to help other families not have to endure this pain.
My heart aches today though. I hate knowing that another mother is cradling her dying baby girl. I cannot even begin to imagine how much she is hurting right now.
I am scared of the day when it is my turn. My turn to cradle Waverly & Oliver. To know I have mere moments left with them.
Please keep Steffany and her family in your thoughts and prayers.