Show your love for Paisley Forsell
Until Paisley was diagnosed, we had never heard of Neuromyelitis Optica Spectrum Disorder, (NMO). In March 2017 we became alarmingly acquainted with this aggressive and dangerous illness. At the young age of 20 years old, Paisley experienced rapidly declining neurological symptoms manifesting in the loss of mobility of her right arm and hand along with debilitating knee and back pain. NMO has left her experiencing significant fatigue and permanent nerve damage. This has greatly affected her ability to walk and her daily functional abilities. For a young woman who was a fierce competitor in the fitness world placing first in her class in her competitions, this diagnosis has been completely life changing. NMO is a rare autoimmune disorder affecting the spinal cord, brain and optic nerves causing blindness and or paralysis. There is no known cure for NMO and is currently a lifelong, relapsing condition. The immunosuppressant infusions she needs to prevent her from relapsing, threatens her ability to fight off other diseases and infections. Even the common cold could be fatal. Due to the pharmalogical treatment of her NMO, she developed a secondary condition called Avascular Necrosis (AVN), which is a condition causing a loss of blood supply to the bone, resulting in bone death. She has needed to endure surgery to both her knees in July of 2017 and another surgery in March of 2018 in attempts to relieve her pain.
Paisley’s condition has severely affected her ability to work and financially support herself. Because NMO is so rare, it is not easily recognized in much of the healthcare field, and is often misdiagnosed, and subsequently mistreated, as MS. There is little support or resources available through the healthcare system or government (disability) at this time. She has not been able to work for over a year and has become overwhelmed with her daily and monthly expenses as well as her treatments and medical bills. Paisley has needed to make many trips to the Mayo Clinic in Rochester to receive her expensive ongoing NMO and orthopedic care. She has also traveled to an AVN specialist in Ohio.
Our family appreciates everything everyone has done thus far. Paisley knows she is not alone in the journey and thanks everyone that has reached out to her. We ask any amount that you are willing and able to donate towards her treatments, surgeries, bills and travel. We pray for health, strength and courage to help Paisley fight this debilitating disorder.
Thank you in advance for your kind support and generosity!
I would like to thank everyone of you that has either donated on the go fund and those that have donated right to her benefit account at Republic Bank! Your thoughtfulness and generosity has not gone unnoticed. We appreciate it from the bottom of our hearts. I hope everyone had a chance to read the wonderful article the Duluth New Tribune did on Paisley. Paisley is doing ok. The heat is very hard on her. The NMO symptoms come full circle when she gets overheated, but she is trying her best to stay cool. The AVN in her knees is still giving her a hard time. We are patiently waiting for the MRI’s in a few months so we know what the next steps will be. We are forever thankful that she hasn’t had any more NMO Attacks. Thank you everyone for your thoughts and prayers.
I thought I would give a quick update on Paisley. Unfortunately, Paisley’s knee pain is returning, which indicates the surgery she had done in March might not have been as successful as we hoped. We reached out to her surgeon this week and he said at this point there is nothing more he can do. She has MRI’s scheduled in November on both of her knees. The results of her MRI will determine what interventions will be most effective, whether it will be pain management or possible bilateral knee replacements. He also suggested that we get in touch with her blood specialist in Ohio for additional recommendations. The heat has really been hard on her. With NMO, heat sensitivity can mimic symptoms of an attack. Since each person with NMO can have different symptoms, anything new can be scary! It’s the not knowing if it’s just a one time issue or the start of an attack that is hard.