Micaiah

Age 3, Oregon, USA

Until January 22, 2016, two-year-old Micaiah was a completely normal child. She was an unusually sweet and cheerful child, who brought a lot of sunshine into our family.
On January 22, 2016, Micaiah suddenly became unable to walk without assistance. We took Micaiah to the doctor, who stated that it was probably just some residual inflammation from the trauma of her fall and to just give it some time. X-rays revealed no broken bones. Micaiah did improve and was able to walk again, but not like she could before. Her walking was unsteady. After a return trip to the doctor, Micaiah was referred to a wonderful pediatric neurologist, who did an extensive history and examination. She told us some options of what might be going on, and then ordered an MRI and some bloodwork. All the bloodwork came back normal.

After Micaiah had her MRI done, we had a peaceful weekend because they let us take Micaiah home afterwards and never hinted that anything was wrong. Her appointment had been early in the morning, and we didn’t hear from the doctor’s office that day. We were going with the theory that no news is good news. However, Monday we got a call saying we needed to come right in to discuss the results of the MRI with the neurologist. We knew in our hearts that it was not going to be good news, but still we hoped and prayed that it would be something that could be fixed. The pediatric neurologist told us that Micaiah had leukodystrophy, but she didn’t know which kind. Her symptoms seemed to be pointing toward the extremely rare vanishing white matter disease (VWM).

On June 28, 2016 we found out that the blood tests confirmed that Micaiah has VWM disease. We have been blessed that we were able to receive a correct diagnosis in just six months. So many times it is misdiagnosed at first. Our lives changed irrevocably that day.
Our lives are a balance between letting Micaiah enjoy life to the fullest, and protecting her from trauma and fever, as these can accelerate the disease. We have rivers of tears, and an abundance of hugs, kisses, and love.

Micaiah loves life and finds beauty in many simple things. Micaiah has a special and uniquely sweet personality. She is little, but loves with every cell in her body.
Follow Micaiah’s story at: https://www.facebook.com/Micaiahsjourney