update on Claire

Update on Claire: We had Claire's neurology and dietary appointments at Doernbecher's on Friday. We had yet more confirmation that Claire's condition is not hereditary. My wife shares a DNA substitution with Claire (which means it is not the source, otherwise Rebecca would share some kind of symptom). We have released Claire's medical records for yet another study. This one will sequence Claire's entire genome. Though we know it will not ultimately change Claire's condition or fate, we are hopeful the studies will help give insights to rare diseases such as hers.

Claire remains as stable as she has been in her life. Though this has been very nice for us, Claire is more lethargic and has not shown therapeutic mental or physical improvement. We may reduce her current Depakote drug level to try to improve your responsiveness. We await labs, but we are still concerned Depakote may also shut down Claire's liver. We will update as Claire's labs come back. Thank you for your well-wishes and ongoing prayers.