Help Delaney Jayne Overcome Chiari

Delaney needs brain surgery for a Chiari malformation.

We are asking for your help.


Delaney graduated from Pusch Ridge Christian Academy a few weeks ago and is enrolled at Arizona State University for the fall. Delaney has always been independent and ready to spread her wings. Her younger sister, Danica, and her mom were both diagnosed with Chiari and Ehlers Danlos Syndrome and have had multiple brain surgeries and fusions over the past ten years. We always told her she was the healthy kid and got the 'good genes.'

About two years ago Delaney began having symptoms that increased in frequency and severity. The pain at the base of skull was one of the worst complaints. She also became dizzy when moving her head and had trouble regulating her body temperature and heart rate. She was diagnosed with Dysautonomia and POTS, Postural Orthostatic Tachycardia Syndrome last July. Since December her pain has escalated to the point of having difficulty getting through a day at school, and she is having troubling cognitive issues.

There was a rush to have an upright brain MRI in early January after a long awaited geneticist appointment raised more concerns. We were then quickly seen in clinic by a neurosurgeon who showed us a significant Chiari malformation. Delaney is stronger and much older than when Danica went through her multiple surgeries, and we hope and pray if we find the right surgeon, she may only need just one decompression. We know these surgeries often fail when all the causative factors aren't explored first.

We also know more than most about the crushing cost of finding and accessing the best care possible.

We are asking for your help.

Her Chiari diagnosis has been a shock to us. We've moved quickly with follow up imaging and testing that will give us more information moving toward surgery. Our goal is to get treatment and have plenty of healing time before she begins college in the fall. She had an appointment with a specialized neurosurgeon in New York on March 12th and a second opinion with my Maryland neurosurgeon March 19th.

Delaney is scheduled for an ICP bolt surgery Wednesday, June 24th with a Chiari decompression of her brain on Friday, June 26th. Both of these are scheduled in NYC. 

We are in SPECIFIC need to reach her out of network and out of pocket for out of network which is $10,000. Her access to this specialized care will make all the difference in her recovery and ability to move forward with her college plan.

We have been blessed by the generosity and support of those aware of our long family medical history, It is with heavy hearts we ask for your help now. We need it more than ever before. We've seen God provide always enough in miraculous ways. We are trusting Him now as we become vulnerable again.

Most of all we ask for your prayers as we do this hard thing again. Please pray for Delaney most of all.

“In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it's wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.”-Elizabeth Gilbert

We will forever be saying 'Thank you.'

Our Hope Remains.

PLEASE FOLLOW here for specific updates and pressing needs. You can also follow our family's story at www.MonicaKayeSnyder.com . We have a long standing family GoFundMe page that will not be closed because of the story it tells and the generous people who follow and have given there, but we've been encouraged to create a specific place here for Delaney's needs.

PLEASE SHARE. So often a need has been met by someone new to our story because those of you who've walked with us have stayed and asked for help with us.  Share on Facebook, Instagram and copy and paste the link and send an email to your generous and praying friends.

Use the #TeamDelaneyJayne to show your support.

Donations

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  • Anonymous 
    • $100 
    • 2 d
  • Beth Kuhn 
    • $100 
    • 3 d
  • Wendy English 
    • $100 
    • 3 d
  • Marilyn Reed 
    • $100 
    • 2 mos
  • The Van Grouws 
    • $100 
    • 2 mos
See all

Organizer

Monica Roberts Snyder 
Organizer
Tucson, AZ
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