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Fight rare neuro-immune disorders. Together.
Ivy was a happy and busy baby. As my first-born, she was easier than anticipated. At the age of nine months, she was crawling and always getting into things. However, within a few hours she became paralyzed from the shoulders down. Ivy didn’t have any presenting symptoms as to why she became paralyzed. She wasn’t sick and didn’t have a cold or respiratory infection. Once I rushed her to the Children’s Hospital of the Kings Daughters in Norfolk, VA, I thought this was a bad infection and everything would be okay. We spent hours in the ER. After I saw more specialists come into our room to evaluate Ivy and leave puzzled, I knew something was very wrong. This was confirmed when the on-call neurology doctor was paged to come to the hospital.
We spent almost two months in the Children’s Hospital. There was a battery of tests that were run on her daily. They tested everything from her heart to HIV to ruling out a stroke. Ivy had several MRI’s and spinal taps which were positive for a lesion in her spinal cord. The doctors started her on steroids and IVIG treatments. When the doctors diagnosed Ivy with Transverse Myelitis, I was in disbelief. They also told me her type of TM was idiopathic because they do not know what caused it. They were able to find out that she had a virus, but her body attacked her spinal cord instead of the virus. As it turns out, this disease is very rare and even more rare in children. Research indicates that there are only 1400 new cases each year in the U.S with a total of 1-8 people diagnosed per million.
The long hospital stay was trying on our family. It got easier after a few weeks when she was moved to the rehabilitation floor and wasn’t poked and prodded all the time. She received extensive in-patient occupational, speech, and physical therapy. We were finally discharged when Ivy was able to wiggle her toes. This was a huge victory, but still very far from the crawling active baby before the hospitalization.
After leaving the hospital, we spent several years attending outpatient therapy. Ivy receives IVIG as needed to keep her immunity levels up. We do see some regression during times of illness. By the time she turned 3 years old, we felt like we had a good grasp on Ivy’s TM. There are a lot of ongoing specialty appointments and therapies that are needed to help Ivy become stronger and more mobile. However, Ivy’s issues did not stop there. We were back in the hospital when Ivy turned 3 years old as she suddenly became very clumsy and stopped walking. After several days, we learned that her bladder was enlarged and she was unable to void urine. Ivy underwent an additional battery of tests and has now been diagnosed with having a neurogenic bladder and colon. Ivy needs clean intermittent catheterization every two hours to void urine and we are looking into surgery to address her colon issues. Once again, as a family we felt helpless. My mind went to Ivy’s future. How am I going to tell my baby that she can’t use the bathroom? How is this going to impact her future relationships? And to make matters worse, it has been an uphill battle trying to find a preschool willing to take Ivy due to her catheterization scheduling.
Ivy is now 4 years old. She has continued to receive outpatient therapies (speech, physical, and aqua therapy). She can run, jump, and play. Botox injections in her calves every four months, serial castings, and leg AFO’s have been a huge success. We have had several difficult times where I would watch her struggle just to walk and move. She can now do all of that and more with her own little “swag” to it. She continues to have some delays in speech which we address at school with an IEP. Overall, I have a happy and well-adjusted child. She is my encouragement everyday as she doesn’t let anything stop her. Ivy knows that she is different, but keeps focused on the physical tasks at hand. She is the most strong-willed and determined child and I know this will continue to help her grow stronger as she gets older.
My hopes are that awareness will be spread about TM. Modern medicine is progressing each day, which means we are one day closer to finding a cure for Ivy. My hopes are also that by spreading more awareness we will educate the services field. We continue to fight to get Ivy approved for services and treatments that she desperately needs. We also look forward to our upcoming visit to the Johns Hopkins Hospital where we will be meeting with a team of specialists in TM!
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