Toddler faces rare Vanishing White Matter disease

Micaiah Martin's family created a YouTube video to raise awareness

Micaiah Martin, 3, diagnosed with an extremely rare,terminal illness called Vanishing White Matter disease, October 19, 2016 (KOIN)
Micaiah Martin, 3, diagnosed with an extremely rare,terminal illness called Vanishing White Matter disease, October 19, 2016 (KOIN)

SHERWOOD, Ore. (KOIN) — Micaiah Martin loves stuffed animals. She’s surrounded by them, including a koala bear and monkeys.

The 3-year-old girl has a sharp mind but her body is struggling. She’s been diagnosed with a disease so rare family members created a YouTube video to spread awareness for research and a cure.

Micaiah has Vanishing White Matter disease, an inherited condition caused by a faulty gene. Symptoms such as muscle stiffness and poor coordination often begin to appear in kids between the ages of 2 and 6.

The disease gets progressively worse.

“Basically it is a neurological disease that is like MS in that it removes that myelin sheath around the nerves and causes you to not be able to move your body,” her dad, Ryan Martin, told KOIN 6 News.

His wife, Sarah, said everything was normal when Micaiah was born.

“She walked on time, she crawled on time, she spoke earlier and a little bit ahead of schedule, and there was no sign that anything was wrong,” she said.

Ryan said he noticed some slight unsteadiness. Then, “the first time she actually fell down and suddenly she could not walk.”

Vanishing White Matter is an inherited disease caused by a faulty gene. Micaiah was diagnosed when she was 2. Fever, minor head trauma and even fright can accelerate the disease.

VWM Families Foundation

“You know it’s terminal, it’s irreversible and unfortunately often strikes young children, so it’s kind of frightening,” Ryan said. Generally, he said, people have never heard of it.

They’re taking it one day at a time, finding joy in Micaiah’s smile and determination.

“She’ll say, ‘I can walk and I fall down,’ but it’s just a matter of fact,” Sarah said. “She finds beauty in rocks and gravel and all kinds of small things that we don’t see beauty in.”

They’ve been learning a lot from their daughter. Each day is a gift.

“Before this I’d always said to my kids, it’s people that matter, not things,” Sarah said. “Things don’t matter. Enjoy every single day because you don’t know how many you have with anyone.”

Ryan and Sarah said they get through each day “with strength from God and we have wonderful friends and family.”