The final journey for a four-year-old with rare disease



Posted on January 19, 2010 at 11:00 PM

Updated Thursday, Jan 21 at 12:01 PM

STEPHENVILLE — The Gain family took their little girl girl home for the last time Tuesday night.

Just a year ago, four-year-old Mikayla was a healthy preschooler. Then — one day — she had a seizure.

It's now too late to save her, but Mikayla's parents are sharing her story to draw attention to her disease, and to warn other parents who may not know they're already living with it.

"Her favorite thing to do was to be outside and draw and watch 'Sponge Bob,'" said Dasa Gain. "We would go to the park, and kids she didn't even know she was trying to chase and befriend, so our hearts would break if they ran away and wouldn't talk to her."

Then — in April — the Gains noticed Mikayla's vision was impaired. Doctors tested her and prescribed anti-seizure medication.

It seemed to work — until September 29.

"She would take a 30-second break and start seizing again until finally it just didn't stop at all," her mom said.

A month later, the diagnosis came: Mikayla had Alpers' disease. Her central nervous system was degenerating, taking her vision, hearing, mind — and eventually, her life.

"When they told us the diagnosis, the doctors all looked at us, and we said, 'OK, what can we do?' And they said there's nothing; there's no cure; there's no treatment," Dasa Gain said.

By January, Mikayla was in a medicated coma to stop the seizures. In desperation, her parents chose a hemispherectomy, allowing surgeons to remove half her brain.

"It was either take her off life support, or do something that was a chance," Gain said.

The procedure didn't work.

So, this week, an ambulance took the four-year-old from Cook Children's Medical Center in Fort Worth to Stephenville, to spend her final days with her family.

"You want to tell them it's going to be OK, but you know that with this disorder it's never OK — it's always fatal," her mom said.

In the time we spent with Dasa Gain, we never saw her cry. She explains that she has learned to push the tears away in public, knowing the strength required for what's ahead.

There is a one-in-four chance the Gains' two other daughters have Alpers' disease as well. Their test results are expected soon.

"It's a scared thing, because Morgan — the three-year-old — has audioneuropathy, and so we're scared it might be a symptom," Gains said.

It is, she said, like waiting for a bomb to go off — knowing it can't be defused.

Mikayla is one month short of her fifth birthday.