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My heart is pounding and I am struggling to find sufficient breath. I am waiting. Waiting for my friend to let me know her daughter has died. I have been in this situation far too many times, attempting to offer support to fellow parents of children with Sanfilippo. These are not peripheral people in my life, but friends. Sisters in Sanfilippo.
I ache for my friend. I was able to spend time with her family in May. A few days of entering into their home, six months after their oldest child passed away. We were in the same place. Grieving the loss of a child while anticipating the loss of another. It is a holy space to sit with another woman who understands. We spoke from the same emotional voids and used language foreign to most other people. It was such a privilege to share that time with her and her family.
Please pray for Brooklyn. Pray for her comfort in these her final hours or days. Pray for her parents and her little sister. Pray for those who love them and long to support them…

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