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Team Alexa

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What is NMO?

Once thought to be a variation of multiple sclerosis (MS), NMO is a rare orphan disease that is now widely recognized as a disease that occurs when part of the immune system dysfunctions, making antibody proteins that attack otherwise healthy parts of the nervous system. In NMO, the attack is directed toward the nerves of the eyes and other parts of the central nervous system (CNS), which include the brain and spinal cord. People with the illness suffer from recurring episodes of Optic Neuritis and Transverse Myelitis which potentially claim the sight and use of the sufferer’s arms and legs.

 

How is NMO treated?

In NMO, the likelihood of recurrence of disease activity is greater than 90.5% Attacks in NMO are devastating, and about 50% of those diagnosed with NMO and untreated are dependent on a wheelchair and functionally blind or potentially dead from respiratory issues by 5 years. Therefore, it is generally thought that ongoing treatment with medications that suppress the immune system is necessary. There are no FDA-‐approved medications for maintenance in NMO, so anything prescribed is done off-‐label. The three primary therapies used in the US are mycophenolate mofetil (CellCept), rituximab (Rituxan), and azathioprine (Imuran). Treatments of non-FDA approved medications aren’t typically not covered by insurance and are therefore, costly. These medications slow down and in some patients control the recurrence of flare-ups. Unfortunately, there is no current cure for the illness and people with it will experience recurring attacks.

 

Team Alexa

Alexa Solakiewicz is the youngest daughter of three and has had Optic Neuritis and Transverse Myelitis three times this year. She is currently on maintenance medication but her insurance deductibles from 6 hospital stays, surgery, and uncovered therapies are building. Her insurance does not cover medications which are not FDA approved and acute treatments may be affected due to the lack of coverage. She has had permanent Optic Nerve damage and CNS damage to her limbs due to her illness. She has spent much of last year in a wheelchair and legally blind. A fund has been started to raise money to cover these charges, please help!

Alexa's Story
"Mom, my head hurts," common words that one would normally hear from an 11 year old with a headache. "Well suck it up and take a Motrin. It's probably just a bad headache,” I said. These words would keep echoing in my mind. "But my eyes hurt," Alexa retorted. "It's probably a migraine. I used to get them all the time when I was younger. You probably have my bad genes but, you are going to school," I replied. "You are so MEAN!" replied Alexa as she slammed the door behind her.
         My heart sank. I always hated being the bad guy and this was no different. As a single parent raising three girls on her own, Alexa was my last baby. She was also my last one at home and she always wanted her way. Her sisters, Nicole and Ashley, were already away at college and I was all hers; it was the "Mommy and Lexie Show." I made her go to school that day and I should have listened. I should have known. I should have seen some sort of sign that something was not right. 
         Alexa had been sick with hiccups and throwing up over the last month with long and never-ending bouts of nausea that I was told were probably due to a bad diet. Yet, I never really gave her junk. I had been watching her weight for basketball and wanted her in top shape for the season. I should have known. Alexa never complained. She still doesn't. Yet, when you are in the daily grind, you often get stuck in a schedule where things keep moving, so away to school she went.
         A few days later the headache was no better and Lexie was complaining that things were getting darker. She couldn't move her eyes; the pain was too intense. I took her to see the doctor. He sent her home with Motrin and Gatorade, saying it was probably a bad migraine and she was likely getting ready for her cycle to start. I did what he said and waited. Two days later, I noticed her dragging her leg and her speech seemed a bit off. She said she couldn't feel her legs, her arms felt like needles, and her tongue felt big. When I called the doctor, he suggested an MRI. By the time we got to the hospital Alexa was blind in her right eye. It is from here that our story begins.
         In those early days Lexie was diagnosed with transverse myelitis and ADEM, a one-time condition often associated with optic neuritis. Her right eye was completely blind. We went through five days of IV steroids and a month-long steroid taper. Five days off of the steroids the optic neuritis began again, this time in her left eye. She was in a wheelchair from the first attack and now she had new lesions on her left eye. Her brain and spinal lesions were still there and inflamed. Again, she endured MRIs, lumbar punctures, a week of IV steroids, and diabetic shots (due to side effects from the medicines). More headache meds were added, and even though she was negative on the NMO antibody test, she was diagnosed with NMO. We were told it would be a one-time thing and she'd be fine. But, she wasn't. Her legs were even worse, her body was on fire, and her strength was non-existent. Yet, we went with doctors’ orders and continued with another taper.
         Finally, in December the whole thing happened again! This time it was with violent vomiting that couldn't be stopped. Again, we were taken to a children's hospital in Tennessee and told she needed IvIg plasma-pheresis infusions. After a week Lexie still felt miserable: the pain in her legs and the movement in them grew increasingly worse; her back, arms, hands, and legs had horrible spasms; and she continued to lose vision. By this time my child had turned to me on three occasions across four months and said, “It’s dark Mommy. Everything has gone black." Again, her words haunt me.
         That time the NMO diagnosis, as well as the transverse myelitis and optic neuritis diagnoses, remained unchanged. Yet, we were again told this could be a one-time deal, just not handled properly, or it could be the onset of pediatric MS. We would know more in the months ahead. So Lexie continued to endure extreme headaches, hospitalizations for side effects of the treatments, dark homes, and limitations on what activities she was able to participate in. She has taken medicines for intracranial pressure issues and, in addition, meds for side effects of these issues.
         Further, Alexa has now been on every migraine medicine known to science and her doctors tell her she should be getting better. Yet she wasn't. Her neuro-ophthalmologist suggested placing her on the MS meds to prevent future attacks and her neurologist referred us to a neuro-immunologist who, a year after her first attacks finally diagnosed her with recurring NMO. 
         Alexa recently had brain surgery because of all of these attacks and may need more in the next year. She continues to have issues with stability, mobility, excruciating pain, and is permanently legally blind. I have been with her every step of the way and, at present, she has returned to school with a walker. (She was determined not to continue to use a wheelchair.)

         The nature of this illness is volatile. Lexie could relapse at any time, and the time needed to rehabilitate her legs and arms, as well as the continued hospitalizations (six this year with some lasting multiple weeks), have deeply impacted what I am able to earn and greatly added to our expenses. We need help. Lexie is sleeping on a couch because she can't climb up to her platform bed. She needs a tablet or laptop for school and I can't afford either. She simply can't carry her books because this causes more pain. Walking is also more difficult for Lexie because she can no longer see the floor beneath her. She needs handicap accessible everything and I am barely keeping us afloat financially. We need your help.      
         If you can contribute even a small amount, please do. If you can't contribute please pray for us and for the others (1 in every 100,000 people) who have this dreaded illness for which there is no cure. Know Alexa and I are eternally grateful for all who support financially or pray for us.
         NMO has no cure. While medication helps with the severity of the attacks, disability is cumulative with this illness. Lexie’s relapses, and the physical issues surrounding them, will continue to be a struggle in both her life and in mine because we are a "TEAM." I just want to be there for her as she struggles through the days ahead. Again, any assistance you can provide will be appreciated. Thank you for your prayers and support. We love you and pray that God will bless every person who is able to help us in our struggle.

Thanks!
Julie and Alexa S.

Donations 

  • Karen
    • $30
    • 10 yrs
  • Lees
    • $10 (Offline)
    • 10 yrs
  • Lees Campus
    • $45 (Offline)
    • 10 yrs
  • Anonymous
    • $500 (Offline)
    • 10 yrs

Organizer

Julie Caudill Solakiewicz
Organizer
Dow, KY

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