NC family raising money to help autistic son get special therapy

Gudelia Santana Ubaldo and her 9-year-old son, Sammy. Sammy has been diagnosed with global developmental delay, autism and mixed language disorders that prevent him from speaking. She is raising money to get him treatment that might help him.

Gudelia Santana Ubaldo and her 9-year-old son, Sammy. Sammy has been diagnosed with global developmental delay, autism and mixed language disorders that prevent him from speaking. She is raising money to get him treatment that might help him.

When Gudelia Santana Ubaldo asks her son to speak, he grabs her hand and gently touches his forehead to hers.

“Dime Sammy, usa tus palabras,” she says, telling Sammy to use his words. He silently leans over the beige leather chair positioned by the window, sun shining across his mother’s face.

He pulls back, shakes his hands and walks toward the end of their mobile home as his mouth begins to form singular vowels: “ah, eh, oo.”

Gudelia knows he wants something, but is not sure what. He probably just misses her company.

Sammy has been diagnosed with global developmental delay, autism and mixed language disorders that prevent him from speaking. He has yet to acquire certain cognitive and social skills standard for his age. But at 9 years old, doctors consider him a walking miracle.

Gudelia was born with an abnormally small and narrow uterus. After 10 years of attempting to conceive with no luck, she almost gave up on having children.

“For me, as a woman it was something very frustrating, not having children,” Gudelia said, her eyes slowly filling with tears as she tracks Sammy’s movements. “I didn’t feel fulfilled as a woman.”

Raising a family was one of the main reasons Gudelia and her husband, Rodrigo, emigrated from Mexico to Siler City years ago. They both found work at a local sock factory and began planning their American dream: a house filled with kids, and within each child, hope for a better future.

Instead, Gudelia found herself unable to get pregnant, and when she finally did, she suffered a painful miscarriage.

A second chance

Emmanuel, the name of the child she lost, is written in black cursive across the pages of a handmade booklet. She gently turns the pages adorned in his memory, white paper stapled together at its spine.

Years after losing Emmanuel, Gudelia became pregnant with Sammy. Doctors warned her that it was unlikely the child would survive, and if he did, he would never be able to walk or speak.

“I told the doctors that I was going to have him no matter what,” Gudelia said. “I didn’t care about the disability. I wanted my son, I wanted children so badly.”

Born at just 25 weeks, Sammy weighed 1 pound, 12 ounces, his body fitting neatly in the palm of her hands. The doctors promised they would do everything in their power to save him, but told Gudelia to prepare for the worst — a state of being she was accustomed to.

For the next three months, Sammy remained in an incubator, each day as uncertain as the next.

“Those three months were some of the hardest and most exhausting months to get through,” Gudelia said. “But, it was all worth it. He became our world. From the moment he opened his eyes, to his first smile to even his first steps. He made us feel complete.”

Sammy has undergone dozens of therapies and treatments in hopes of improving his ability to communicate. After years of speech therapy, Sammy can just barely pronounce one word: mama.

“As a mother, I think about the future when I won’t be here on this earth anymore,” Gudelia said. “I want him to speak so that he can become independent and stand on his own two feet.”

A new hope

With the weight of her son’s future on her shoulders, Gudelia sat down to watch an episode of “The Doctors” on Univision, an American Spanish-language television network.

The mother on the screen appeared to share every struggle Gudelia felt she was facing alone. The woman, named Miriam Gimal, told the talk-show hosts how her daughter was born severely autistic and couldn’t speak.

She had tried all the traditional therapies with little to no improvement. And then, in one final act of hope, her daughter received a MeRT brain treatment. MeRT, an emerging technology owned by Wave Neuroscience, attempts to reprogram abnormal electrical signals in the brain.

The basic premise of the treatment is that the brain is made up of neurons: cells that use electrical currents to communicate with one another to execute the most basic of functions, from tying our shoes to speech.

While most pills and medicines focus on the chemical aspects of brain activity, MeRT attempts to coordinate disrupted brain waves found in patients with depression, anxiety, PTSD and autism. In the case of Gimal, the treatment led her daughter to speak for the first time.

“Recently we had a young girl, she was nonverbal, 6 years old, had been in speech therapy for four years and then she literally could not stop talking,” said David Day, owner of NEUCOA, a brain treatment center in Virginia Beach, Va., that uses MeRT technology.

“The hairs were standing up on our arms,” he said. “Both parents’ jaws dropped when they heard her talk. They knew that she was in there. But something was slowing that process.”

Expensive therapy

One month of MeRT treatment costs around $8,000, a bill unthinkably high for Sammy’s family. Gudelia no longer can work the afternoon shift at the sock factory, as she takes care of Sammy full-time. Due to COVID-19, Rodrigo was left unemployed for three months, only able to return to work once the factory reopened.

To help families facing financial difficulties, NEUCOA offers two-week treatment blocks, allowing payment two weeks at a time as opposed to a lump sum. Patients can then decide if they are happy with the results after two weeks and choose whether to continue.

Even then, it’s not guaranteed that the treatment would help Sammy speak. According to research done by the Brain Treatment Center, 66% of patients with communication difficulties experienced speech improvement.

“If they have the results and they’re happy with it, then we encourage them,” Day said. “But I’m not forcing their hand. I want this to be a cooperative understanding of if we see progress, if the child’s benefiting from it, and if families can afford it.”

In hopes of raising money for the treatment, Sammy’s family created a GoFundMe page with a goal of $20,000. As of Nov. 23, they have raised a little more than $1,300, mostly made up of small donations from the local community. The title of the GoFundMe is “El Regalo del Habla,” or “The Gift of Speech.”

Thought the results of the treatment may be uncertain, Gudelia said she has faith that if Sammy defeated the odds of survival, he can, by those same odds, speak.

“That’s the wish and the dream I have for my son, that he speaks,” Gudelia said. “It would be like a gift, if my son gets that therapy, it would be like a Christmas present at the end of the year.”

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