Wednesday, March 18, 2009

Prayers Needed for 5-year-old twins

I'm still sick, my kids are still out of town (and I'm getting terribly homesick for them!), but God woke me up at 4am to pray. May I ask you to join me in praying for the cousins of a friend of mine here in Reno. Addi and Cassi have a rare, fatal disorder called Niemann Pick Type C (NPC) disease. It is a lipid storage disease frequently referred to as the "Childhood Alzheimer’s."

According to their medical blog, both girls will be undergoing surgery this morning to implant ports. These ports will allow infusions of an expirimental new treatment for the girls and their first glimmer of real hope that they might win this battle! Please join me in prayer.

Here is a quote from their website that explains a little more about the battle they are up against:
"Every moment of everyday, harmful amounts of fatty substances and cholesterol called "lipids" are rapidly building up in our spleens, livers, lungs, bone marrow, and brains. Our cholesterol is getting stuck inside millions of our cells — not our bloodstreams — and causing a massive traffic jam which is ultimately killing us. Doctors do not fully understand why this is happening to us but they have some clues. They believe a cascade of events is happening inside our bodies - first sphinosphine malfunctions which depletes critical calcium stores from our cells. When calcium is depleted from the cell it creates a bottleneck of lipids in the cells which kills them. To the outside world, we exhibit progressive neurological symptoms which are ultimately fatal in childhood."

1 comment:

Jenni said...

Thanks for the post. My kids are going crazy right now, but I at least wanted to say thanks.