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SARIEAH'S TRIP WITH CJD

$45,954 of $60,000 goal

Raised by 430 people in 10 months
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...
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Reminder: Celebration of life for Sarieah is Saturday October 13th, 2-6 pm, at Camp Colton. Kid friendly, live music, talk story, food, libations and slide show.

Please let us know if you haven’t on Facebook event, celebration of life, Sarieah Eva Jane Macdonald.
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My beloved, Sarieah, radiant lovinator, goddess of the light, speaker for the less fortunate, warrior for justice and truth, passed peacefully Friday July 6th at home surrounded with love.

How you found your way so deeply into my heart I will never know...Your light shines so brightly, your smile, laugh and beautiful twinkle in your eyes will be missed. Your magical ways have gone cosmic and we will look for them day by day...

Thank you all for your support in this trying time in our families life. While this chapter comes to an end, the next has already begun, may her memories warm your heart and inspire the greatness she always pursued.

It is my hope and wish that you help usher in the change of more love and support and understanding during our brief moment here on this planet. Take a moment and with a deep beath just be...(know I'm taking many of these moments...)

I really appreciate and am grateful for all of the support through this platform and in person. It really does take a village. Thank you again.
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Equinimity: mental calmness, composure, and evenness of temper, especially in a difficult situation.

I find myself in this state. Of course much sadness, grief, even anger pops into the field on occasion. Though continue to strive in equinimity.

We continue to have good days and bad days. Good days look like good appetite (finishes brain health smoothie), happy, pleasant mood, great eye contact and tracking of those around her. Bad days look like, poor agitated sleep, agitation, distant gone feeling, out of it, eyes not tracking, poor appetite. These cycle like a breeze, for no apparent pattern or reason. It's where we are.

Transitions occurring in our house as life goes on. One of our boys left on his adventure for the summer with his girlfriend. Hugs and goodbyes said, one of our care team asked me over as Sarieah was in distress and she hadn't seen this before. Occasionally bowel issues can cause some agitation for Sarieah, this was different. It was exactly as our son was pulling out of the driveway in the van to leave, I mentioned you know, her son is leaving right now, and with that Sarieah welled up and cried...big tears streaming down her cheecks..a great reminder that she is still in there...

The dementia component of CJD and dementia in general is so very hard for those of us remaining in this plane, wondering how much of our loved one is left in there, the shell of their body...

Sarieah is between the worlds, the veil is thin, I can only imagine the timeless space she inhabits for greater portions of the day.

Our oldest is getting ready for his adventure this upcoming month, time goes on, the world is big, travels and adventures must occur. Our scene is changing here at the house, we are in the process of figuring out our care needs and what that looks like. We have some good conversations scheduled this upcoming week to gain clarity on this front.

We continue to clear our space, take care of the vibe, and each other. I'll remind you to do the same. It's important.

Thank you all who have supported us through our mealtrain ( https://mealtrain.com/l72wer) the nourishment is so very helpful, as it's way easy to get into emotional eating patterns...if you know what I mean.

With love, Greg

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The sage Tom Petty said it well, the waiting is the hardest part...I'll add trusting that everything is as it should be is incredibly difficult too. I would not wish this path on anyone. And yet, it's the one we are on.

We've got the hyperbaric chamber on board, logging as many minutes as we can, looking to get another 35 hours in the chamber this month (we're at 16). One of us has to go into the unit with Sarieah as that's the state of being she is currently in.

I received an intranasal stem cell treatment as part of my training to offer this to folks in our community (and explore possible use with Sarieah). She has received 6 units of stem cells so far, we are about 2 months from the first administration. I'm not sure we will do the intranasal delivery mainly due to her comfort level and understanding on what is going on. I am using these at the clinic now, a gift of the experience and will help many.

We are a long way into this process, with looking back, about a year plus in...with first signs starting December 2016 and then really accelerating last April 2017.

I was interviewed by my friend and colleague Dr. Trevor Cates on her podcast, http://thespadr.com/deep-healing-of-chronic-dis-ease-with-dr-greg-eckel/ Where we talked through this process and how it's transforming my medical practice and understanding of the dis-ease process.

We've got a lot of transitions upcoming with the older boys moving to other areas of the country, exploring and growing. This will change up our care team strategy and increase some of our needs for coverage for Sarieah.

We had a family meeting this past week were we let Sarieah know that if she wanted to move on that is OK as we don't want her to suffer needlessly. With the transitions upcoming I thought it good to get that out there, as we're on a long journey here and wanted everyone to be on board.

The waiting is the hardest part...She's not showing tremendous signs of change, though always surprises us in that Sarieah type of way, with a look or a smile or a sound.

Our meal train is still going and is so very helpful! Thank you all that have participated.... https://mealtrain.com/l72wer

Please keep us in your thoughts, prayers and love. We appreciate it...

Here's Tom Petty...giving it his all.... the waiting
https://youtu.be/QpG09PenZt8


Our hyperbaric home unit
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$45,954 of $60,000 goal

Raised by 430 people in 10 months
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