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Cord Blood Stem Cells Successfully Treat 5-Year Old with Autism

When Amanda and Shawn Fohs’ daughter, Olivia, was born in 2013, the couple decided to bank their daughter’s cord blood stem cells. Considering today’s scientific advancements and the potential for future uses, storing their daughter’s stem cells felt like a “no brainer.”

Cord blood stem cells are FDA-approved to treat more than 80 conditions, including childhood leukemia and sickle cell disease and are being studied in 100s of other clinical trials – including autism. The Fohs never imagined that these stem cells would be the key to reducing the severity of Olivia’s autism.

In January 2019 with a single, 15 minute procedure, Olivia’s cord blood stem cells helped reduce her autism severity from ASD level 2 (mild to moderate) to level 1.

"We went from her speech therapist telling us she was never going to speak and stop wasting our time, to her not being eligible for outpatient speech later that year after her stem cell treatment due to them determining it was no longer necessary. The improvements were incredible."

The Results of Olivia’s Stem Cell Autism Treatment

Within days of the transfusion, Amanda and Shawn began to see immediate results. Olivia showed an increased rate of improvement in her overall communication and social demeanor. She began speaking more clearly and thoroughly and could carry on a basic conversation.

“Now, her language and social skills are not as obviously delayed!”

Her eye-contact significantly improved and they experienced a positive, noticeable change in her personality. Before the transfusion, Olivia rarely wanted to interact with any other children, but now actively engages with others and seeks out social interactions.

Father and daughter lying on a bed.

Recognizing the Early Development Delays in Olivia

At two years old, Amanda and Shawn begin noticing Olivia’s speech and social skills falling behind others her age.

Most of her communication was limited to single-word responses and she struggled to make or keep eye-contact for more than a few seconds. Doctors diagnosed her as farsighted – autism wasn’t even on their radar.

As Olivia went into Pre-K3, she still struggled with speech and social interactions. Her conversations were very direct and brief, with most of her responses being one to three words.

Olivia was set-up with an early intervention program and began seeing speech and occupational therapists. With months of therapist visits under their belt, Olivia only showed minimal improvements. Amanda and Shawn began to realize there was something else, not simply farsightedness that doctors first diagnosed her with.

After numerous visits with specialists, Olivia was diagnosed with autism at age 4. 

A contributing factor to her delayed autism diagnosis was that outside of speech and social interactions, Olivia was hitting most all other milestones for her age. Her parents agreed there was no question she was intelligent and had always been relatively high-functioning. As Amanda shared, “her memory is insane! She reads or sees something once, she can remember it and it doesn’t matter how many years it has been.”

Standing as Your Child’s Biggest Advocate

In Pre-K, Olivia was placed in an IEP program based on a language delay. Both parents quickly became frustrated with the help and support (or lack thereof) Olivia was receiving.

"We had one of her speech therapists telling us, ‘she was never going to speak and to find nonverbal communication options.’"

Olivia’s parents refused to accept this statement. They were committed to finding the best treatment options available for their daughter.

Frustrated by the speech therapist’s sentiment, the Fohs began researching alternative treatment options, beyond speech and occupational therapist support she was getting in school and via outpatient services.

A little girl embraces a cheerful cartoon character, radiating joy and affection in their heartwarming embrace.

Duke’s Expanded Access Program for Autism and Autologous Infusions

In the United States, Duke is one of the leading universities when it comes to pediatric stem cell research and clinical trials for autism.

Through online research, Shawn became aware of a clinical trial being conducted by Duke University’s Pediatric Transplant and Cellular Therapy program, where they were giving children with autism autologous cord blood infusions.

Utilizing umbilical cord blood-derived cell therapies may have the potential in alleviating ASD symptoms by modulating the inflammatory processes in the brain.

The children accepted into the trial would go through several behavioral and functional tests immediately before the cord blood infusion to establish a baseline and then again at 6 and 12 months.

The Fohs applied for the trial. Although they were not accepted, Olivia was invited to receive a transfusion of her banked stem cells through Duke’s “expanded access program.” This meant she would receive the same procedure, but her data would not be used in the study.

Cord Blood Stem Cell Transfusion Process for Autism

When a cord blood stem cell transplant is needed, the stem cells must be released from the cord blood bank and securely transferred to the performing transplant team.

“At Americord, we strive to make the stem cell transfer process as straight-forward and painless as possible,” Marty Smithmyer, founder and CEO of Americord shared. “We know that families have a million things going on leading up to the transplant. The last thing we want them to have to do is worry about the release.”

Once the family contacted Americord, our Customer Service team managed the entire release and coordinated with the Duke team.

As Amanda put it, “sending [Duke] the cord blood was the easiest part of it all. Americord did everything for us.”

After months of jumping through hoops, in January 2019, they arrived at Duke Hospital for Olivia’s transfusion.

The transfusion itself took 15 minutes. The entire time doctors monitored vitals to ensure there were no adverse reactions. From the time they arrived to the time they left, the entire process took just over an hour. 

After the procedure, they said Olivia was “just a little drowsy,” but she had no adverse side-effects.

The procedure was considered a success.

Two young girls with backpacks making a peace sign and smiling.

Turning a New Page: Olivia’s Continued Improvement

Three years since her transfusion, Olivia continues to excel. Recently she started at a new school and they’ve made it a point to include her as much as possible. She participates in 70% of general education activities at her new school. Something that her parents credit to her continuous improvement. In fact, with Olivia’s newfound interest in meeting people, she asked if she could read the roll call so she could learn everyone’s name when she started during the extended school year summer program – she quickly memorized them all, including the children arriving for Summer Camp.

When asked what their advice was to expecting parents considering banking their child’s stem cells, Shawn and Amanda followed with a quick, “absolutely, do it. If you can afford it, do it, because you never know when you will need it.”

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