sanfilippo.

Today I wanted to write about something a bit different, in honor of MPS Awareness Day. (I'll explain what that is in just a second.)

I met Matt and Shannon McNeil at Taylor, though I don't know them well. Shannon and I were next-door neighbors my freshman year, but because we actually lived on two different wings and she was two years ahead of me, we never spent much time together. Still, I've been following their story for many months now.

Matt and Shannon's two children, Waverly and Oliver, both have MPS IIIA, also known as Sanfilippo Syndrome, an extremely rare and devastating genetic disorder. I won't pretend to understand the science of it, but essentially children with Sanfilippo are missing an enzyme that causes them lose the development milestones they've gained. Among other symptons, they lose language skills, mobility, and even chewing and swallowing skills. The life expectancy varies from child to child, but children generally do not live past their early teens.

You can read more about Sanfilippo at the National MPS Society website.

I'm writing this to ask you (all five of you who read my blog) to pray for the McNeils. You can follow their story at Shannon's blog, Exploring Holland. I do, and it is a good reminder to keep praying for this family.

Matt created a beautiful video photo montage of Waverly and Oliver - please take a few minutes to watch it.

If you'd like to help financially, Matt and Shannon's friends have set up a fundraiser, called A Hundred for a Home, to help them buy and outfit a house, so they have a stable place to enjoy the time they have left with their children.