SARIEAH'S TRIP WITH CJD

I am starting this Go Fund Me campaign because we need your help.  Sarieah, the love of my life and a spectacular force for good in this world, has been diagnosed with Creutzfeldt-Jakob disease (CJD), a rare (1 in a million) neurological disease with no known cure at the moment.

Sarieah is unable to speak, with no words/sentences for the last several months. She is unable to walk, unable to feed herself, unable to stand.  She is present with us, with her spirit, and responds in her own way, with facial expressions and the occasional gesture.  I know she is in there.

We are on hospice currently, as Creutzfeldt-Jakob is diagnosis that ends for most people in less than a year.  With half our income gone, and the increased care bills, I am reaching out for help.

For those who don’t know, CJD is similar to mad cow disease, only in humans.  It is a cruel irony that our beautiful Sarieah, who has not eaten meat in more than 30 years, got a variant of mad cow disease.  Nobody knows how or why.

This picture was from spring break 2017 in Pittsburgh.  Although we didn’t know it at the time, our world was about to be shattered.  Sarieah and I took the kids back east for a family trip to see her favorite hockey team (the Chicago Blackhawks) vs. my Penguins (I lost the bet and had to wear Blackhawks gear in Pittsburgh).  We then went to NYC.  This was the last trip where all seemed well.  After this trip, it has been a terrible journey through dementia, disability, and devastation.

Because it is so rare, Creutzfeldt-Jakob is a hard diagnosis to get to.  At the beginning, we were confused by the increased memory issues, repeating conversations, and looking for lost items after our house move.....

Over the summer of 2017, it was clear that this was not a simple memory loss.  It was full blown rapid dementia.  Over the last 6 months, the disease has progressed, robbing Sarieah of all basic functions of life.

I have been hard at work researching, talking with the experts, and putting together a coherent treatment plan. We are holding out hope for a cure.  According to Western medicine, there is none.  But we persevere.

If anyone could do this, Sarieah can.  Never one to do things traditionally, Sarieah has been a bold and strong voice for those with no voice.  Her patients dearly miss her.  You can see the depth of Sarieah’s impact by the reviews her patients have left -  https://www.yelp.com/biz/nature-cures-clinic-portland).

Her kids (all 5 of them in our blended Brady bunch family) dearly miss her.  Her extended family dearly misses her.  And I miss her every moment of every day. 

In order to survive this situation, we will need help.  I have put $30,000 down on this form, to help with daily care, medical bills, and food.  Anything helps.  We have support from Sarieah’s brothers, helping with daytime care costs (thank you guys!), though this cost will increase as time goes on.

We have a meal train going if you are local in the Portland metro area (https://mealtrain.com/l72wer). Please reach out to us. 

I've had many ask what they can do to help.  Truthfully, it is hard to answer, as I've never been through this before.  And I'm not good at asking for help.  I've been in the survive and “get-it-done” mode.  But I realize that we are at the point of needing support. 

Thanks for reading this far.  Whatever you can do to help, we will repay you with love and appreciation.

If you know the kids, please reach out to them so they know there is a community that cares and that they are in that community.  You would be proud to watch these kids take of their mother.  Cleaning, feeding, soothing.  It is at once soul-crushing and uplifting.

The veil is pretty thin for us these days.  Much love to each of you, as we are all growing through this process.  Hug those around you, and please tell them you love them.  You never know how long ya got...