Support Geri's Fight for Recovery

Geri, a loving wife of 41 years to Rob, mother to 2 and grandmother to 4, has always had a heart for family and community.

A longtime counselor and former nurse, Geri began having extreme stomach pain in August 2023. Her pain was excruciating and unrelenting. She suddenly became paralyzed from the neck down. Months went by with no answers, until doctors finally confirmed a diagnosis of variegate porphyria, a rare genetic disease that attacked her nerve endings and left her medically fragile. Geri’s case was an extremely rare case. However, the good news was that, despite all odds, a recovery was possible.

Since her diagnosis, she has had multiple setbacks in her recovery journey; to name a few, in ICU, she has battled blood clots, pneumonia, pulmonary emboli, and a collapsed lung, and she suffered a closed loop bowel obstruction that required her to be life flighted back to Cleveland Clinic, all of which nearly killed her. Some medical professionals strongly recommended hospice, and more than one physical therapist said there was no hope.

She was sent to continue medical care at home in April. Since then, she has regained strength and movement in her arms, core, and legs, and she is working hard to one day walk again!

Geri’s diagnosis was a shock to her family and community. Her husband, Rob, was forced into early retirement because of this and now serves as her full-time caregiver. Due to expenses from this illness and its complications, Rob has gone through half of his retirement savings. Geri currently has hundreds of thousands of dollars in outstanding medical bills that insurance will not cover, and Rob and family have had to cover most of the in-home nursing and therapy expenses out of pocket.

Geri faces an uphill battle. As we've been told by specialists, time and therapy are what she needs for a chance at recovery. She has a long road ahead of her. As her children, our goal is to raise $50,000 to cover some of Geri’s treatment costs, including physical therapy, medical bills and expenses, medical equipment, and future recovery needs. Every contribution helps her recovery.

Geri’s extended story is below. We are grateful to friends and community for their prayers, meals, cards, and visits. I cannot tell you how much it has meant to her and to us. Thank you for your continued care and support.

Geri just recently posted a YouTube video, introducing her story. You can watch her here:

Geri’s Story

In August 2023, Geri went to the ER for what she thought was a bladder infection. The diagnosis did not account for her rapid deterioration and decline. Within a few days, she was transferred to Cleveland Clinic. What we thought would be a quick fix turned into months of testing and searching for answers. Meanwhile, Geri kept declining. Within a few days, she lost feeling in her hands and an ability to make a fist or grasp onto anything. Within a few weeks, she lost total and complete motor function. Geri found herself paralyzed from the neck down without any clear reason. Her lungs also were not working well, and she was in and out of ICU. She was put on oxygen. She also lost 85 pounds.

Finally, after months of hospitalization and testing, Geri received her diagnosis: variegate porphyria.

Variegate porphyria (VP) is a rare genetic disease that affects the blood, mainly the production of heme, a vital component of hemoglobin in red blood cells. When triggered, porphyrins build up in the body and begin to attack nerve endings. Going undetected, in extreme cases, can render patients paralyzed.

Because it is so rare, porphyria is and has been misunderstood by many medical professionals, resulting in a lack of quality care and setbacks in Geri’s recovery journey. At one point, hospice was strongly recommended for her, and more than one physical therapist told her there was no hope and no point in continuing treatment. However, we were reassured by Geri’s amazing geneticist/hematologist that she could, with lots of time and lots of therapy, make at least a mild recovery.

Geri was eventually transferred from Cleveland Clinic to multiple rehab hospitals and, eventually, a nursing home to continue her recovery. Rob was with her every step of the way. During this time, Geri had multiple setbacks. She developed influenza A, pneumonia, blood clots, pleural effusion, deep vein thrombosis, all at the same time. She had severe infected wounds on her legs. She was in ICU on 60 liters of oxygen at 100% saturation, all while not being able to move. No one thought her body would be strong enough to recover from this.

However, Geri did begin to recover. She grew stronger and eventually left the ICU and the hospital. She was later discharged home to continue receiving in-home medical treatments. 6 days after she returned home, she was life flighted by helicopter from Plymouth to Cleveland Clinic for an emergency closed loop bowel obstruction, where surgeons said it was a matter of hours before she would have died.

Thankfully, after recovering from the bowel obstruction, Geri was transferred on April 8 from Cleveland Clinic back home. Since then, she has been in good health and spirits and has worked so hard every single day at her recovery.

Since late April, Geri began moving her arms. On May 30, Geri got her wish: she was able to hug her grandchildren again. She has slowly rebuilt strength and movement throughout her body. She no longer needs a Hoyer lift to be transferred. She was fit for custom braces to start trying to relearn how to walk. The goal and hope is that she will continue with therapy and be able to walk someday soon!

On behalf of her family, thank you for your continued support.

--Amy (and Josh) Walker and Mick Carlson, Geri's children