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Reaching for the Chicago Life Raft

Yesterday we got some great news. Marian has an appointment April 7 with an NPC expert in Chicago who has accepted her as a patient, given her a rush appointment, AND can begin administering the treatment if it's not ready in California yet. Our local hospital is hard at work trying to get the treatment approved here so we will not have to travel back and forth to Chicago; however, to know that it will be accessible is an enormous relief. I've really been struggling with the knowledge that every day that goes by Marian's system is suffering. The variability of the disease makes it quite difficult to know what to expect - and therefore how to prepare. Is the day when the progress stalls and then begins to slip away going to be in a year? Five years? Heaven forbid, tomorrow?

Needless to say, the sooner the better to start the treatment. The sooner the treatment begins, the more healthy cells still exist for the treatment to protect and try to preserve for as long as possible. Now I'm not much of a math or science wiz (see previous entry about failing Algebra twice), but in preclinical studies cyclodextrin doubled or tripled the life of NPC cats. In NPC cats that received the treatment preventatively, i.e. before neurological symptoms, their lives were extended by eight times. I am praying this will be the case for Marian.

We are deeply deeply grateful to the doctors and NPC families who have scooped us up during this time and paved the way for Marian to get treatment as soon as possible. The only reason Marian can even access treatment, (potentially, knock on wood, spit spit, fingers crossed), is from families and doctors who pioneered the road before us. If not for them we would have months and months of helpless waiting, the window of saving her closing slowly but surely. If not for them we may not have a treatment at all.

This was meant to be an uplifting post, but the gravity of the situation comes and goes, and right now it is really pressing. We love our sweet girls so much, and feel both incredibly unlucky to be in this situation, and at the same time incredibly lucky for a path to treatment and hope.

We had the girls at the park today and while Marian was pretty tired from a little cold, she did have a Hercules moment of hoisting herself up onto her push car, standing with a saucy lean, turning her head around and tossing a big grin, with a "check out what I just did, mom"glint in her eye. Check you out May May. We later entertained her by throwing a water bottle in the air. Hey, it's not all rocket science.

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