Delaney’s cervical fusion on December 20th in NYC

Delaney is scheduled for cervical fusion on December 20th at New York Presbyterian/Weill Cornell in NYC. 

Once again we are asking for your help.

Delaney is almost half way through her sophomore year at Arizona State University. After her June 2020 Chiari decompression she had much relief from the severe headaches and neurological symptoms. As she healed her cervical instability became more evident. Initially it seemed situational, positional and manageable. Gradually her pain, dizziness and visual changes escalated and began to severely limit her life. She has been pushing through her full class load while working 15-20 hours a week at the ASU art museum. She can do 'one thing' a day. If she goes to class she has to come home and lie down. If she works she comes home and collapses. She's missed out on the social part of college almost completely because of her pain. After seeing her July imaging and meeting with her neurosurgeon we knew this surgery was necessary and coming. It is important to stabilize her spine to protect her spinal cord and give her the best chance at a fully functional life. Doing this between semesters is hard but necessary to give her time to recover before needing to work full time this summer as well as wanting to pursue the amazing opportunities in the art world that bring her purpose and joy. 

Delaney and I will fly to NYC on Tuesday, December 14th.
She sees the second neurosurgeon who will be an important part of her fusion surgery on Wednesday, December 15th.
She sees the plastic surgeon who will skillfully close a much larger incision on Thursday, December 16th.
She will have new pre-op imaging on Friday, December 17th.
She will have cervical fusion skull to C4 on Monday, December 20th, at New York Presbyterian Hospital/Weil Cornell. It is a long surgery. She will go to the ICU the first 24 hours post-op. She will be in the hospital 3-4 days and then released to a local hotel until she is strong enough to fly home.

We can't do this impossible thing alone.
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. Aside from the medical bills we are facing what seems like impossible access to care during Christmas in New York City on the upper east side. The cost of our flights there, transportation to and from JFK and around the city and meals over a 14+ day trip are overwhelming. But hardest of all is finding and affording a place to stay over this time before surgery and after to recover before flying home. We have very specific needs, particularly needing to stay very close to the hospital as well as a safe as possible mast cell environment as I will be Delaney's care giver. Christmastime in New York City is more expensive than we could have imagined. 

And then we have to fly home. 

We would have lost heart if we hadn't experienced God's faithfulness over the past twelve years for what is now the 38th surgery for myself, Danica and Delaney. Yes. 38. Your love for us, over and over again has made a way and given us the most well life possible in these broken bodies. We are humbled. We are aching with gratitude.

Thankyou for your prayers. This one seems hardest of all. I am facing oral surgery on Monday and will receive my Truxima infusion on Friday. We are still facing appointments and med changes with Danica's POTS. Navigating all these things is difficult. But friends, it is Advent and Christmas. Leaving Dan, Danica and Twixie here and traveling so far from home is heartbreaking in new ways. 

We are tired and sad but leaning hard as we do each next thing. 
What began as a detour has become the road. 
He is not unkind. We are safe to hope.


https://youtu.be/hEywKIQlChc (This song is our anthem right now.)

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.

**Story from her first surgery in June 2020.
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.

  • Anonymous 
    • $100 
    • 3 d
  • Christina Weyrick 
    • $50 
    • 8 d
  • Christine Ludwig 
    • $500 
    • 10 d
  • Pamela Alt 
    • $50 
    • 11 d
  • Deborah Zavoyna 
    • $100 
    • 11 d
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Organizer

Monica Roberts Snyder 
Organizer
Tucson, AZ
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