Helplessness is never a good feeling. When it’s yourself it can feel terrifying but when it’s your child, it’s maddening.

Katja’s Chorea continues to worsen. 3 months ago she was a fully functioning independent 8 year old that was recovering from her 3rd open heart surgery.

Now, she’s a fully dependent child that can not complete any tasks without significant help.

Katja’s symptoms are beyond anything she’s had before. She can no longer control her body.

Her arms/legs flap around like one of those gas station blow up people, only to collapse over and pop back up again.

Her hands shake, her joints randomly lock up, her speech is slurred from all the tongue movements and her little body is constantly aching. She isn’t sleeping because she can’t stop the movements.

Her team made the call Monday afternoon to admit her to Seattle Children’s for additional testing. It’s been 3 days and we still don’t have answers.

As a parent nothing is more devastating than feeling helpless. I can advocate for her until I turn blue but it doesn’t change the facts:

PPC is rare.

No one knows what causes it or why.

No one has developed treatment for it.

No one has answers.

So we are helpless to get her relief. Her team is too. We’ve tried over 25 different medications in the last 5 years to treat this. None have worked. We’ve done PT/OT/Speech and so much imagining with MRIs and brain studies.

She’s had autoimmune panels, DNA tests, blood tests that I didn’t even know existed, genetic sequencing to test her response and reactions to medications and entire blood work ups. We’ve checked for viruses, infections and rare disorders. We’ve done all of this about 5 different times now.

Every single thing is negative.

Helplessness is better than Hopelessness.

We are still hopeful that we can find a medication to treat her. We are still hopeful that, like last time, Katja can beat this. We are still hopeful that her team won’t fail her.

But we have to keep waiting for answers…