A family friend called me on Wednesday and told me that her little 5 month old grandson, Dylan, was diagnosed with Batten disease several months ago and that the disease has progressed so rapidly, hospice has been called in and that sweet precious boy has less than a month to live.
He can't hold his head up any longer and he doesn't want to eat much anymore. Joyce told me that though he is so gravely ill, he still smiles and coos like he isn't sick at all but over this next month, Dylan will go blind and lose all neurologic function before he passes. When I lost my daughter to SIDS over 25 years ago, after a lot of anger and grief, I came to the realization that God needed another special angel up in heaven and he chose my Brianne. I told Joyce the same thing - God has chosen Dylan because he is so special. His 6 month birthday is in 2 weeks and they are hoping to be able to get him to that milestone and will hold a little party for him if he makes it that far.
Nonetheless, this is extremely heartbreaking and I ask for all of your prayers that sweet baby Dylan's passing is peaceful and that Joyce, her son and daughter-in-law and the rest of the family can one day find closure and peace in their hearts knowing that their precious little boy is at peace, pain free and with God.