Dear Friends, Family and Supporters of all kinds,
Several weeks ago, our beloved niece, Rayna, a vibrant, strong, athletic and highly intelligent young woman, contracted Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), a rare autoimmune condition. Auto-immune diseases occur when your immune system (antibodies) confuses healthy parts of your body with threats. With MOGAD, your antibodies attack your central nervous system – specifically, Myelin Oligodendrocyte Glycoprotein (MOG), which is part of the protective cover that surrounds nerves (myelin) in the brain, spinal cord and eyes. Damage to myelin can permanently affect how your body functions, and a person may experience blindness, bladder or bowel dysfunction, paralysis (arms and legs), chronic pain, chronic fatigue and cognitive impairment (difficulty learning, remembering and thinking). The disorder comes on very quickly, causing severe inflammation in the optic nerve, spinal cord and brain, and leads to a rapid decline in health. MOGAD affects 1-3 people per million each year.
We are reaching out in this way to tell Rayna’s story and to ask for your support.
The Beginning
Rayna’s nightmare began a month ago when she awoke in the middle of the night with a splitting headache and pain in one foot. The following day, despite her discomfort, she chose to attend school. By that evening, however, she had a high fever, was vomiting and the pain had spread to both feet. She was unable to sleep that night, and by morning she had become increasingly unresponsive, was still vomiting, and her physical condition seemed to be worsening.
Rayna’s mom, our sister Robin, rushed her to the Emergency Room at Texas Children’s Hospital. By the time she got there, Rayna’s condition had worsened - she had lost feeling in her legs and was more unresponsive. She was immediately admitted to the Intensive Care Unit (ICU), where she was intubated (put on a ventilator or breathing tube) to keep her airway open and support her breathing. Shortly after her admission to the ICU, Rayna had become completely unresponsive – and she remained that way for several days.
The doctors quickly conducted a spinal tap, MRI and other tests to determine the cause of her condition. Though MOGAD is quite rare, the Neuro-Immunology team at Texas Children’s Hospital, one of the leading pediatric medical centers in the country, was quite familiar with the disease. They quickly suspected it was the cause of Rayna’s illness, even before they had definitive test results. They began treating her with intravenous steroids, intravenous immunoglobulin (IVIg) treatment (a pooled antibody and biological agent intended to normalize a compromised immune system) and plasmapheresis (PLEX), a procedure in which a machine is used to separate one’s plasma (the liquid part of the blood) from the blood cells, after which the separated plasma is disposed of and the blood cells are mixed with a liquid and returned to the body. During this time, Rayna was heavily sedated with Fentanyl.
Rayna’s Road to Recovery
The past weeks have been a roller coaster journey, filled with remarkable demonstrations of Rayna’s strength, resilience and determination, interspersed with pain and daunting physical challenges. Part of her recovery involved regeneration of her central nervous system, which caused tremendous pain throughout her body. At the same time, the doctors were reducing her sedation. Rayna was able to stay awake more, be more responsive and begin physical therapy – though her pain levels increased (often remaining at 7-9 out of 10).
Not a day has passed without Rayna showing signs of progress. After 3 weeks of hospitalization, her breathing tube was removed. She remained on minimal breathing support for a few more days and is now breathing completely on her own. She continues to have daily physical therapy and has progressed from being unable to move at all, to barely moving her head and toes, to moving her limbs, to holding herself up, to standing and then to walking (slowly).
When her breathing tube was removed, Rayna was unable to talk due to irritation in her throat from the ventilator. She had therapy to assist her in speaking and regaining the ability to eat and drink. She’s approved to eat and drink whatever she wants; and she can speak, though currently at a reduced volume.
After 3½ weeks in the ICU, Rayna was moved to Transition ICU and then quickly to the Inpatient Rehab Unit, where she remains today, continuing to work hard and improve daily. Over the past few days, she has started doing her schoolwork to start the catchup process.
While Rayna’s recovery to date has been nothing short of miraculous, her recovery journey is far from over. She will continue to need physical therapy, both in the hospital and once she goes home. Once home, she will continue to receive monthly IVIg infusions to minimize the risk of recurrence.
Why We Need Your Help
This experience has, quite obviously, been a life-altering experience for Rayna, Robin and our entire family. Like so many dear family friends (as well as Rayna’s incredible group of friends), we continue to support her during every step of her progress toward full recovery.
We are creating this GoFundMe page because, in addition to the many challenges this episode has created, there is a substantial financial burden – one that falls entirely on Robin, a single, working mom. Though Robin has been reluctant to reach out to others for financial help, I know that many of you have been asking what you can do to help support Rayna and Robin.
At the present, we believe that Rayna’s needs will include:
• special equipment, at least on a temporary basis,
• possible continued emotional support (including therapy) once she goes home, as suggested by her doctors, and
• certain adjustments and modifications to their home.
In addition, while Robin is on Family Medical Leave, it does not include any salary. Anything you may be able to contribute would be very much appreciated and will help both Rayna and Robin in the days and weeks ahead.
What You Can Do
We’re setting a fundraising goal of $75,000 to help cover anticipated costs necessary for Rayna’s full recovery. Whatever financial support you feel comfortable providing will directly help Rayna. And whether or not you are able to donate, please feel free to share Rayna’s story with friends and family who may be interested and able to help.
Rayna has never shied away from any challenge, so it is no surprise that she continues to fight this battle with the courage and strength that define her. If you wish to follow her continued efforts and successes, you are welcome to do so on the CaringBridge we created (https://www.caringbridge.org/site/ec978bc2-5ea2-11ef-b94f-0ba14f27d36c). PLEASE NOTE, HOWEVER, THAT DONATIONS ON THE CARINGBRIDGE WEBSITE DO NOT BENEFIT RAYNA. If you wish to donate money to support Rayna, please do so on this GoFundMe page.
Thank you for your prayers, positive thoughts and generosity.
With appreciation and love,
Karen Redden
Debbie Rothermel
Mark Laufman