Rest In Peace

Please take a moment to watch the video I shared below. It is brilliantly done and so accurately tells the story of life with Sanfilippo. Sadly, the little boy featured in the video passed away this week. Please keep Dylan's family in your thoughts and prayers. Our community is heartbroken.


Anonymous said…
Thanks for sharing the video, Shannon. I'm so sorry. n
Dawn said…
Oh no....I just had watched it. Oh I am so very sorry. So very sorry.
Kimmy said…
Thank you for sharing, Shannon, it is a beautiful video, albeit it brought tears into my eyes. Such a loving tribute.

My heart goes out to all Sanfilippo mothers and their children.

Thank you for sharing your life on this blog as well, I often think of you, Wavey and Oliver. I also follow Eliza O'Neill case and hope that the enzyme replacement therapy trials will start soon to finally bring an end to all the suffering.

Anonymous said…
Beautiful little boy, beautiful family. Peace to all his family and friends.
I read every post you write and my heart is with your family. I watched Dylan's video twice. I will pray for his family and I'm so sorry for the pain and loss this horrible condition causes.
Anonymous said…
Thank you for sharing. I will never know what is like to walk in you shoes, or another Sanfillipo family's, but do know that those of us who follow your family's journey, do try and feel your heartbreak, pain, joy, and strength, just a little. I feel like I owe that to you. Thank you for keeping us updated.
Continues prayers for you all,

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