Micaiah’s Journey with Vanishing White Matter Disease

Until January 22, 2016, two-year-old Micaiah was a completely normal child.

The pregnancy and birth were problem free, and she met every developmental milestone. 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. Her three-year-old cousin said that Micaiah had fallen down while they were trying to walk backwards as they played. 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). VWM is a neurological condition that destroys myelin, the brain’s white matter, thus causing the brain to lose its ability to send signals to the rest of the body. Currently only about 250 people worldwide are known to have VWM disease. VWM is progressive, untreatable, incurable and terminal. The neurologist ordered a genetic blood test and wanted us to see a genetic specialist at Oregon Health Sciences University to confirm.

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. We were supposed to watch our sweet and special little girl grow into a beautiful woman, not watch the skills she had learned and proudly conquered slowly slip away. Now she crawls instead of walking. Too soon she will leave us instead of living. Parents aren’t supposed to say goodbye to their children, especially when they are still children.

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. Even being startled or frightened can accelerate the decline. We have felt every emotion. We have so many questions, but no one has any real answers because so little is known. We have rivers of tears, and an abundance of hugs, kisses, and love.

Micaiah can still walk if she is holding onto someone or something. She loves life and finds beauty in so many things that we overlook. Micaiah has a special and uniquely sweet personality. She is little, but loves with every cell in her body, especially babies. She would ask multiple times a day when she was going to have a baby. I would tell her in about 20 years, but now we know she most likely won’t be here in 20 years. (Interestingly enough, she has never asked that question again since we found out she has Leukodystrophy.)

We have moved in with our parents, as we sell our two-story house, in the hope that eventually we can find a one-level house where Micaiah can maneuver her walker, and when the day comes, her wheelchair. We want it to become a home for her while she can still move around and enjoy it. We are thankful and blessed for every day we have with this precious girl!

Written by Micaiah’s mom

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Small amounts of money can have outsize impact in the world of‪#‎VanishingWhiteMatterDisease‬ (VWM). Because ‪#‎leukodystrophies‬ are so rare, therefore research relies heavily on private donations. Even if it’s a small amount, please consider donating.