Today is day 11 of Kari being served a mitochondrial cocktail. A cocktail “generally comprises three or more liquid ingredients, at least one of which is alcoholic.” In Kari’s customized mixture there is no alcohol but there are lots of ingredients – seventeen in all! Most of these are vitamins and the key item is an amino acid, arginine.
The reason we’re serving it up to Kari is to try to treat her condition at its root. The cocktail is prescribed by a medical doctor / mitochondrial specialist at the Children’s Hospital of Philadelphia.
Will the cocktail work? We don’t know. Kari is one of only 45 people known to have this genetic disease. And she is the oldest. Most die in infancy. Not sure that any others with her specific diagnosis have been given this treatment. She is therefore something of a guinea pig. Joan and I are to be the observers, noting any changes.
Have we seen any results so far? A few, but not significant enough to blog about. So far, no total elimination of seizures, nor signs of development.
Yesterday we were encouraged to learn that it typically takes six to eight weeks to see any changes. Another reason for encouragement: She is tolerating the concoction quite well. To put this in context, imagine suddenly going from taking a few pills a day to sixty or more. Hard to imagine not reacting to something – in the very least not having some GI irritation. Fortunately, there aren’t sixty pills to swallow. A compounding pharmacy puts pure forms of these ingredients into liquid which can go into her g-tube. Even so, she’s being hit with a lot of stuff! It is quite a cocktail.
After 34 years, is it reasonable to look for a miracle for Kari? In a way, it seems to us that her living long enough to come into an era with this level of scientific discovery – that is God’s intervention. That he would lead us to this type of testing after all these years and that she could be diagnosed, that is divine providence to be sure. There are many other pieces to this puzzle that had to come together so that we could have this full of a picture.
And so, we ask God to continue to do amazing things. And yes, we are praying this this cocktail would help Kari connect with the world around her.
In the meantime, Kari is still the same sweet, amazing, contended daughter who brings us joy. Whatever else could change with Kari, that surely will not!