Better Together for Cari Luz

Hi All!! I’d like to thank you all for supporting Cari Luz and her husband Paul through this extremely difficult battle with Systemic Ehlers Danlos Syndrome,  Hypermobility Type (hEDS) and it’s Spinal and GI Manifestations. We just never know what life has in store for us, but what we do with it matters so much! Cari has displayed great purpose in this battle for her life and quality of life! She speaks of God using her and this journey for the greater good of those she’s able to reach through advocacy with her story of recovery and has already saved some lives through helping others with answers in their journey.

Cari was recently and unexpectedly diagnosed with a genetic connective tissue disorder known as Ehlers Danlos Syndrome Hypermobility Type (hEDS) with Vascular Type Tendencies that include risk of vascular and organ rupture making her condition potentially life threatening without continued treatment. She needs highly specialized care and her condition explains the unexpected severe illness that she surcombed to just 11 months into her and Paul’s marriage. With her husband standing by her side, she has fought hard living mostly homebound and bedbound using a wheelchair off and on to make it to Doctor appts, etc.  She has faced terrorizing symptoms since this all first began that has lead to medical PTSD. She has been working through with Psychologists specialized in medical trauma and loss.

Cari is in the process of filing for disability as she has continued to work through her illnesses up to this point and continues to do what she can when she can. Her husband, Paul has done his best to solely care for his wife and their home as they fight for her life on the road, seeking the best care to do so. Cari has redirected her focus towards her own stability and change in our nations healthcare system. In the meantime she is bringing hope and help to others as much as she is able to during this difficult time.

Her and Paul have recreated their lives, leaving home, their family, friends, and their church family to pursue care that is not available close to home. They are trusting God to lead the way in an affordable camper they have purchased and are living in until they can get her stable enough to come back home. They are currently trying to save their home yet are not certain if it will have to be sold yet to continue on. The drastic and unexpected changes in her health have placed incredible hardship on her and their family in all aspects. Mentally, physically, and most certainly financially as well. However, there is hope for significant recovery with proper care, major surgeries, and a chance to stop the threat of the life altering and life threatening progression of this condition. The goal is for her to continue on, living out her life with God’s great purpose she aspires to fulfill!

Cari recently underwent one of the most serious and painful surgeries that can be done outside of a Brain Tumor Removal. On November 23, 2020 she received a brainstem decompression and Her Skull was fused to her spine down to her C3 vertebrae. The surgery, known as an Occipitocervical Fusion (OC Fusion), saved her life from stroke, paralysis, severe seizure disorders, and the risk of sudden death after a severe and rapid decline that stole her life as she knew it and almost ended it. The surgery was massively successful and has given her so much of herself back, yet she still has a long way to go.




Cari fiercely fought Ulcerative Colitis for 2.5 years followed by the development of Complex Regional Pain Syndrome (the most painful condition known to mankind) with her Full Colectomy and Ostomy Placement on November 28, 2018. She never recovered fully and faced severe neurological decline, yet she didn’t give up on herself. She found the answers she needed through months of desperate research and travel to confirm the her diagnosis with EDS, Craniocervical Instability, Intracranial Hypertension, Mild S Shapes Scoliosis and Occult Tethered Cord. She is a fighter and isn’t willing to give up anytime soon. For her it’s not just about her own recovery as she is paving the way for others like her who have yet to find real help themselves.

Cari has spent her recovery out of state from her home in Huntsville, Al, away from her family, friends, and church while residing in a campground in Charleston, South Carolina. She has been doing rehabilitation with a highly specialized physical therapist that works with her types of cases primarily and has now been accepted into a Palliative Care Program (like hospice for curative illness) at MUSC. She has a fighting chance and has come so far!!!

After her Occipitocervical Fusion (OC Fusion), Cari learned from her neurosurgeon that she was walking a paper thin line between life and sudden death as well as permanent severe disability as her skull had completely dislocated from her spine at the C1 & C2 joint.

The surgery was HIGHLY successful and resulted in major reductions of about 80% of 21 Comorbid conditions and her 45+ symptoms that she had developed. Prior to surgery she was unable to do any activities, suffering from drop attacks, unable to hold conversations well, experienced seizures, and even had a mini stroke about a month before her fusion. She barely made it, but her recovery has been miraculous!

Unfortunately, Cari is not done yet. Her Occult Tethered Spinal cord (a mild spina bifida where her spinal cord is attached at the base of the spine) is still pulling down on her brain stem as well as her lower neck. This is putting pressure on the nerves and spinal cord in her neck that not only help control bladder and bowel function but also control the entire body from the neck down.

This could still have her at risk for quadriplegia or stroke from pressure on her arteries should she not receive proper rehabilitation of her neck and a Tethered Spinal Cord Release. She is fortunately able to work with her physical therapist to prevent further fusion in her neck at this time, however given the current situation she is facing, her life and quality of life are at further risk and will need to be resolved as soon as possible. She is facing a crucial complication with her GI tract that must be resolved urgently.

Following her OC fusion, Cari’s GI dysfunction took a turn for the worst becoming increasingly severe, painful, and life threatening. This complication has made it impossible for her to eat or drink without creating a small bowel obstruction leading to a 15% decrease in her body weight and severe dehydration. It has detoured her from her spinal surgeries and she has temporarily left Charleston to seek help from the Mayo Clinic in Jacksonville, Fl before returning to Charleston to continue her spinal surgery/recovery process.

If help cannot be found at Mayo Clinic, she plans to keep seeking help before returning to Charleston so she can continue her spinal rehabilitation despite this setback. Without help, she risks bowel perforation, infection, gangrene of the bowel, and further deterioration from malabsorption and dehydration. This could wreck her recovery and could lead to further complications if left untreated so she is desperately seeking the help she needs.

This has been extremely scary for her and her family, yet she is staying strong and her and a Paul are facing this courageously. Since Cari already lost her Colon 2 years ago, she is dependent on her small bowel completely. It cannot remain in this new and worsened state and making it emergent. Diagnosis of this mystery condition and corrective surgery for it is crucial to her survival and ability to continue on her road to recovery. Without it, she could face the need for a bowel transplant and more risk to her life.

Her small bowel is constricted causing partial to full blockages of waste. Multiple ostomy bag leaks are burning her abdominal skin like battery acid risking gangrene or other serious infections not to mention excruciating pain. The only bowel she has left to live on will need surgery with a diagnosis or not, but without diagnosis more risk is involved leaving her and Paul with no choice but to fight for it. Her bladder is also at risk for failure due to neurogenic bladder from occult tethered cord paired with decline of fluid intake. Putting her at risk from kidney infections, damage, or failure due to dehydration and problems with liver function with the meds she has to take.

Discussion of the need for detethering of her spinal cord is being discussed as she recovers from the Skull to C3 Fusion and will be done once the GI complications are addressed and she recovers from it. Her neurosurgeon is extremely worried about her risk to infection and her ability to recover from the Tethered Cord Release and further spinal fusions should she become even more malnourished than she is already. He sees the situation as dire and has extended his intervention out until she is recovered enough from this complication.

Her physical therapist is also concerned with the deterioration of her spine should her bowel not be addressed soon and will need to work with her post op to any bowel surgeries to ensure she doesn’t experience a regression in her progress making it very important for Cari to remain in Charleston until she is ready for her cord detethering and through that recovery as well. Once she is stable enough, she will finally be able to return home.

Bowel reconstruction itself can include multiple major surgeries to repair her ostomy, yet she is in need of this desperately. All of this will need to be done as closely together as possible, creating more hospital stays and a longer duration of rehabilitation than she preciously expected when she and Paul first left home to seek care. There are few EDS specialized doctors in the U.S. making this a long and difficult journey that requires extensive travel.

God has plans to see this all through.  It has already taken an unlikely miracle for her to get where she is surviving life threatening ulcerative colitis and PseudoTumor Cerebra caused by Craniocervical Instability with Brain System Compression. She is well on her way to stabilizing her health so that she can follow her dreams to start an organization and community consisting of patients and doctors, providing education and resources much needed to change the future of care with EDS. She desires to make care accessible at all major hospitals and beyond so that others do not have to leave home unexpectedly to survive as she has. Through education future EDS patients can be diagnosed to PREVENT the complications that can arise through early intervention.

All of this resulted from untreated, misunderstood, and misdiagnosed conditions that were not understood to be related to Ehlers Danlos Syndrome since birth. Her condition was left to progress and to play out, yet miraculously and fortunately, Cari was able to self diagnose. She found the right neurosurgeons and specialist that confirmed her suspicions and her recovery finally began. She now not only faces the chance to survive, but to live a mostly normal life despite her long endeavor to manage this potentially fatal and life altering condition.

Cari intends to fight hard for her chance to finally become a mother one day. She hopes to be able to walk more again, to cook and to host friends/family. She is confident she will soon enjoy life outside of medical which is something she’s been unable to do for a long time. God is good and all powerful and Cari believes he has big plans for her journey. She wants nothing more than for her story and work to prevent others from suffering the consequences that can arise through lack of diagnosis and care with this common yet rarely diagnosed condition.

Thank you so much for you prayers, support, and generosity! Cari is so incredibly humbled by the support and love she has received from you all since she first became ill in 2016 ! It’s time for her to continue to get better after her highly successful initial surgery in this recovery process! If you cannot donate, please share her story and pray for her. Any medical supply or other donations can be arranged by emailing :

[email redacted]

Donations will go towards  :

Campground Expenses (usually $30/night)
Insurance Copayments for Surgery/Hospital Stays, and Specialist Visits
Insurance Deductible for 2021 ($5000)
Physical Therapy/Rehabilitation
Medical Supplies and Medical Support Products