Tomorrow is Kari’s 34th birthday. For those of you who know her, another such milestone is amazing! We begin our celebration this evening with a small family party. And something else is happening today: Kari’s younger biological brother, Jeremy, is going to give a blood sample for genetic testing at the Clinic for Special Children (CSC) in Strasburg, PA.
Nearly two years ago the CSC began the most comprehensive testing on Kari ever. Basically, they are looking for a “needle in a haystack.” Somewhere within the 23 pairs of chromosomes, 20,000 plus genes, and 1,000,000 plus individual points on the DNA that they can “see,” there is most likely the clue to all her seizures and disabilities.
Last week we got word from the CSC that they found something “promising.” That’s the reason Jeremy is going there for genetic testing today. They’ll look to see whether he has the same needle in his haystack. The comparison will either confirm or deny their hypothesis.
We’ve had “promises” in the past. A leading neurologist in NYC found Kari to have an elevated acid in her bloodwork and he was sure he was on the path to an answer. For two years Kari was on a medical diet that stopped all her seizures (down from 100 a day, including up to five grand mals). After her diet was completed the electrical storms in her brain gradually returned. And then there was Kari’s “awakening:” She was twelve years old. For thirty days we were astounded to see new developmental abilities each day – like an infant who had unlimited potential – only to see her regress to her previous disabilities. Though we tried, we were unable to recreate the circumstances that allowed this window to the miraculous. How heartbreaking that was.
When a geneticist gets excited and uses the word “promising” it obviously gets our hopes up. We think this is the closest we’ve been to an answer for Kari. But even if a diagnosis is finally made (after 34 years), that probably doesn’t mean there is an accompanying cure. The next step might be finding a researcher with interest in that part of the DNA. But maybe knowing what it is (apart from a cure) could help provide something to control the seizures a little better, maybe even help her connect better with her world. All of this will take time of course. There are all the other previous studies on Kari (and Ryan) that need to be reviewed for comparison and confirmation. Hearing of “promise” requires patience.
As you feel our hopefulness, we’d love to have you join us in prayer. Perhaps it would be God’s will to provide an answer to this mystery. Maybe there is something that could really help Kari after all these years. Whether or not that prayer is answered in this life, we rejoice in knowing there will be a day when Kari will be fully healed. We have that confidence because God always keeps his promises!
Ron (and Joan)