Delaney's cervical fusion on Dec 20th in NYC

This is an update from Delaney's specific GFM page. I continue to post here in this long love story of kindness that has saved us over twelve years and 38 collective surgeries for myself, Delaney and Danica and so much other care we've needed. 

"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.

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.

"Where there is great love, there are always miracles."-Willa Cather

This is the quote that became our mantra during Danica's Chiari diagnosis and surgeries in 2009 and 2010. It's come back to mind as we moved closer to Delaney's brain decompression in NYC in June. We hope and pray for full healing, but we also know the real miracle is strength and provision to do the next hard thing and the kindness that changes everything. 

We've moved and are grateful for our new little nest.
Many of you have asked for our new address:

The Snyder Family
39628 S. Diamond Bay Dr.
Saddlebrooke, AZ 85739

Most of you have been following and giving here for many years and many surgeries and treatments for myself and Danica. I like to leave this story here as a reminder of your kindness and of God's faithfulness. 

"Thank you." Two silly words.

Our Hope Remains. 

Dan, Monica, Delaney and Danica

"Then Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying,'Thus far the LORD has helped us.'" -I Samuel 7:12



The story below *** details the beginning of this gofundme campaign.  Since early 2016 YOUR GREAT LOVE has provided access to four major brain and spine surgeries with very specialized neurosurgeons for Danica and I.  For me there was a life changing VP brain shunt in April, 2016 at UVA, a huge spinal fusion of C1-T1 in October, 2016 in Maryland, and a VP shunt revision in April, 2017 at UVA.  In November of last year Danica had a dangerous hardware removal and refusion of her skull to C4.  I also received chemotherapy treatments every six weeks during this time, and we made many trips back and forth to our far away doctors for scans and follow-ups.  Without your giving we never could have accessed this level of care.  Just the travel and hotels, especially post surgery, compounded by the deposits and high deductibles would have made these surgeries impossible.  

We suffer gratitude.  We offer praise.  We never once have taken YOUR SACRIFICES for granted.

During my trip to Maryland week before last, when I saw for myself on my MRI that my spinal cord has retethered and understood this meant there was a real reason for my increasing pain and disability of particularly my legs and feet, I also had to step into a room with a financial person to look at an existing balance with my neurosurgeon and the new deposit for this November surgery.  Why is this the hardest part?  I just couldn't bear to ask one more time.  Dan couldn't bear for us to be receiving one more time.

I went with a few thousand dollars gifted from others to try and "settle" the past amount for about half of what I owed.  Instead they suggested I put it towards the new deposit that must be paid for the upcoming surgery by October 24th and then setting up a payment plan after this surgery for the remaining.  

My counselor encouraged me to "ask."  My sister suggested she start a new campaign because this one looked like our need was met.  I've prayed.  We've prayed.  We are transparent before you.  This is our need.  God is faithful.  He will provide.  We will give Him the glory.  

My November 8th surgery with take 3-4 hours.  I will be in the hospital at least three days lying flat to prevent any spinal fluid leaks.  I must remain in the area in a hotel for 7-10 days after discharge before a post-op appointment and permission to return home.  Because he is removing a vertebrae to detether the spinal cord at a higher level than before and then replacing and fusing it with bone marrow harvested from my hip I will have to keep my spine completely straight for at least a month.  This means bed rest with a brace.  Dan plans to take off work the first week and be with me during surgery and the days in the hospital, but I will need a caregiver once I'm released to the hotel and more help when I return home.  Please pray for this.  Please pray for my family, especially our Danica.  She is having periods of great anxiety about my surgery and me being gone.  Delaney is more resilient but longing for an extended period of time for our family to just "be."  Dan is a saint.  He has been working seven days a week lately and comes home to do all he can to keep me from stretching and injuring my cord any worse.  He is tired.  He does each next thing while loving the girls and I so well.  Please pray for my heart and for my body.  I want to quit.  I am so weary of the fight.

Please pray for me as I try to navigate even out of network coverage from my insurance company.  I've received two denials for special MRIs done in Maryland.  I am submitting letters today showing the massive out of pocket expenses I've incurred, particularly the deposits but also the travel and hotels, since 2011.  These are in addition to in network deductibles, our large out of network deductibles and out of pocket maximum which for our family is $24,500!  This is just an example of how we will never pay all our bills.  Your love to us helps us see these specialized doctors who have committed their lives to those of us with EDS.  

Thank you.  We are amazed how God brings the ones who have walked this very long road with us since the beginning and completely new love to be enough...more than enough for each next challenge.  Thank you for praying and sharing our story.  

Our Hope Remains.

***My heart's cry for 2016 was for one year without having surgery and without "asking" for anything. Just one year.  I pleaded with God to write something new for our family. His answer is clear. Be faithful here. Endure here. Surrender here. I'm doing something for your good and my glory. Trust me, child.

The money you all helped us raise this spring which you see in the total so far allowed for me to travel to UVA in Charlottesville, Virginia and have a third failed lumbar shunt removed and a ventricular shunt placed near my brain.  It has given me the most relief from headaches and pressure I can remember and restoration of my sight and hearing on the right side. YOUR LOVE did this.  Thank you.

Your donations have also helped us make three big trips to Cincinnati with our Danica with lots of imaging.  The first was over spring break, before my shunt surgery.  We found out her hardware and one level of her fusion is broken.  In July we traveled back to scan again and saw the hardware is moving and closer to her brain which is dangerous.  We took another trip in August to meet the new ortho sugeon and neurosurgeon assigned to Danica's difficult case and discuss the necessary surgery.  We left conflicted about their lack of experience and vague scope of surgery.  At the very same time I pursued an opinion from a very respected neurosurgeon who was just moving to Johns Hopkins.  His expertise in the cranial cervical junction is exactly what Danica's rare case needs.  After reviewing all her images and entire history and past op reports he called to let me know he was willing to take her case.  We feel very sure God has led us to this difficult surgical decision even thought it means navigating an entirely new hospital system, networks of doctors and care, not to mention a new city.  Danica's surgery is scheduled for Wednesday, November 30th, at Johns Hopkins Medical Center in Baltimore, Maryland.  It will involve several days of pre-op testing including an invasive myelogram, a long 6+ hour neurosurgery including taking part of her little rib to make the best fusion material possible, a few days in the ICU and a week after in the hospital.  We may need to stay close for post-op or have to travel back and forth.  

Less than three weeks ago, on October 19th in Lanham, Maryland, I had an unplanned major spinal surgery that involved removal of hardware from last summer's lower cervical fusion, aspiration of marrow from my hip to make new fusion material and a rod being placed from my C2 all the way to my T1 to save my spinal cord which was under pressure from vertebrae at several levels.  I am struggling with basic recovery.  I cannot drive and do not know when or if this will happen.  I am healing and the relief from the constant spinal cord pressure is very real.  

Your quick love met needs for a deposit and out of pocket costs for a very sudden surgery.  We were down to the last night when I was packing and a friend called with Hilton and Marriott points to share and help cover the several thousand dollars of hotel costs.   God always provides a ram in the thicket!  

Over the next week I will be adding information here about our specific needs and how you can pray and help.  I have a trusted friend who has offered to help coordinate.  As always you can give here and know the money goes directly to travel and medical needs.  

We suffer gratitude for your faithful love and prayers for us these long years.  "For we do not want you to be ignorant, brethren, of our trouble which came to us: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us, you also helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through many." II Corinthians 1:8-11

"YOU helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through MANY."

Your prayers. Your gifts. Your thanks to God for all the good He's done and requests for the good He is sure to accomplish . . . You are working out God's deliverance in our lives.

Please.  
We inhale as we ask in faith.
Thank you.  
Two silly words that could never emote the depths of our gratitude as we exhale praise.  

Our Hope Remains.

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Monica Roberts Snyder 
Organizer
Tucson, AZ