After a horrifying health scare, an education choice scholarship is opening doors for Milah

Milah Ambrose is 5 and on the autism spectrum. She receives a Florida educational choice scholarship and will begin kindergarten in August.

To her parents, Celestina and Joseph, these are comforting times in the life of their oldest daughter.

“(The scholarship) will open doors for her to be able to do whatever she would like to do,” Celestine said. “She’ll have the confidence, the toolset as she gets older, so she can live a somewhat typical life for her age.”

“Typical” is a reassuring word for Celestina, because Milah’s journey to Florida and her scholarship was far from typical.

It was terrifying, horrifying, and any other adjective that can be used to describe a parent’s worst nightmare.

Born in Fort Walton Beach when Joseph, a technical sergeant in the U.S. Air Force, was stationed at Eglin Air Force Base in nearby Valparaiso, Milah moved with her family to Wyoming when her dad was transferred to F.E. Warren AFB, in Cheyenne, Wyoming.

That’s where the trouble began.

Milah, 18 months at the time, couldn’t sleep through the night. Then she wouldn’t eat. That lack of sleep caused Milah to hallucinate. Pediatricians offered two possible causes: a brain bleed or a brain tumor.

“We were shattered,” Celestina said. “Our whole world changed overnight.”

To complicate matters, Celestina was pregnant, Joseph was working a ton of hours, and the nearest specialists were two hours south in Denver.

“Milah was sick all the time. She looked like a shell of herself,” Celestina said. “She couldn't even play with other kids, because she would get so sick, and she would start heavy breathing, like she couldn't catch her breath. It was super strange.”

A sleep study was ordered, and it showed Milah stopped breathing on average 125 times an hour.

The good news?

“The neurologist told us that her brain looked phenomenal,” Celestina said.

“Then she said, ‘I'm willing to bet she's super smart. And I'm like, ‘Yeah, that's not the problem. The problem is the fact that she stops breathing when she's sleeping.’ And the doctor asked, ‘Have you ever considered altitude?’”

The altitude in Cheyenne is 6,086 feet above sea level. It is 7-30 feet in Fort Walton Beach, Florida. Some people need time to adjust to the higher altitude. Children typically adjust more quickly than adults. But not Milah.

A two-week trip to Arizona to see family saw a nearly 4,000-foot drop in elevation. Milah slept uninterrupted for hours each night.

Eventually, Milah was diagnosed with severe central sleep apnea triggered by the high altitude. A logical fix was a transfer to an Air Force base at sea level, but transfer requests, even for medical hardships, don’t often happen immediately in the armed forces.

“So, I fought,” Celestina wrote in a Facebook post. “I contacted the (Wyoming) governor’s office. I sent every medical record, every sleep study, every desperate plea. I refused to be dismissed. I refused to be quiet.

“Our daughter’s health was on the line, and I wasn’t going to let her suffer one more day for the sake of red tape.”

Celestina, Milah, and their daughter, Alainah, moved to Alabama to live with Celestina’s parents. Milah’s condition improved, and Celestina continued her fight.

It worked.

Joseph was transferred to Patrick Space Force Base on Florida’s Atlantic Coast in Brevard County.

“Sea level. Pediatric care. Peace. Healing,” Celestina wrote.

Milah no longer suffers from sleep apnea, and her weight is normal for a 5-year-old.

But other behaviors concerned her parents.

Milah had sensory and transitional overloads. Everyday routines could result in meltdowns. She refused to be strapped in her car seat. She became anxious and confused in social settings.

After undergoing tests, Milah was diagnosed with Autism Spectrum Disorder Level 1.

“Some people might have looked at it as, ‘Oh, wow. Now there's a label on my kid.’ I looked at it as an answered prayer, because there's nothing wrong with her. It’s just her body is too sensitive,” Celestina said.

Milah has always been smart.

“Wicked smart,” Joseph said.

Her first word, spoken while walking along a pier in the Florida Panhandle beach town of Navarre, was “etched.” She saw a word written in sand, pointed, and said, “etched.”

“She used it properly,” Celestina said.

Milah has what her parents call her “super-power.” She can predict bad weather.

“She can tell us sometimes that it’s going to rain before there's even a cloud in the sky,” Celestina said.

It was while researching educational options and therapies for Milah that Celestina and Joseph learned of Florida’s Family Empowerment Scholarship for Students with Unique Abilities. The scholarship, managed by Step Up For Students, allows funds for parents to pay for tuition, therapies, and products such as those that help their child with sensory overloads.

“We went through all these trials and tribulations and traumas trying to care for our daughter to make sure she’s alive today,” Joseph said. “There were so many financial burdens. Then we come here and got that relief, and we can continue her journey.

“It’s a blessing, and I’ll say that tenfold until I’m blue in the face.”

Milah is currently being home-educated for VPK. Her parents plan to continue home-education through the Melbourne Christian Co-op when Milah begins kindergarten. They are also using some of the scholarship funds for extracurricular activities such as gymnastics to help Milah improve her social skills.

“Having things available for a child with special needs is no longer a financial issue, because it’s been taken care of (with the scholarship),” Celestina said. “If Milah wants to do something, if she shows an interest in something, it’s right at our fingertips. The scholarship can provide that for her.”

The doors are open.

Roger Mooney, manager, communications, can be reached at [email protected].