Representation for disability, HIE, and cerebral palsy in media — movies, books, and television — just got another boost. Netflix’s latest release, “Lucca’s World,” is a poignant drama that delves into the challenges and triumphs of a family navigating life with a child born with HIE, and diagnosed with cerebral palsy. The film is inspired by the real-life experiences of Bárbara Anderson, who, along with her husband Andrés, embarks on a journey to India seeking an experimental treatment for their son, Lucca. The movie captures their resilience, hope, and the lengths to which parents will go to provide the best care for their children, something we are familiar with as families in the HIE community, and others, will literally go to the ends of the earth for their children.
It’s important for viewers, and especially families in the Hope for HIE and cerebral palsy communities, to know what makes a good Hollywood story, and what is rooted reality from the lived experiences of the family the movie it is based on, especially when an experimental therapy is specifically mentioned.
What is fact vs. fiction?
In the movie, Lucca goes through an experimental therapy called the cytotron laser, which is portrayed to “clean out” the dead and damaged tissue from his HIE at birth and regenerate brain cells and neural connections. He grows up from his severe cerebral palsy, being able to learn to walk, talk and is even on a podcast, and he stops having seizures.
What we know:
Bárbara Anderson, author of the book, and Lucca’s mom, has a public presence, sharing the growth and development of Lucca, and how he is today at age 13. From her posts, the lived experience of Lucca does not seem to match the movie’s “miraculous” portrayal. Lucca does looks like he is living his best life! Is he walking like the movie shows? The photos and videos shared show Lucca in a wheelchair with some unfortunately obvious physical contractures in his legs and arms, and no photos of him walking with assistive devices. Is he talking like the movie shows? There is a recent video of Lucca in a PROMPT speech therapy session where the therapist is working with him to say “Mama”, and it’s a beautiful video!
So, what do we know about the therapy and science presented?
NeuroCytonix is the current company that is located in Mexico, providing cytotron therapies. Cytotron was initially given a provisional FDA breakthrough designation in 2019 for cancer treatments, but there is no additional information on studies conducted for the various cancer indications. The FDA provision designation did not include pediatrics, neurology, or cerebral palsy, and if information about this provisional designation was available on the FDA site, it is no longer.
In 2019, NeuroCytonix started a clinical trial for children with cerebral palsy. It completed enrollment in June 2021 with 52 children noted on the Clinicaltrials.gov website. However, as of today, there is no published data on the results from this study, either on the trial site, or on the company website. The last information was published in January 2023 (nearly two years after it completed) with a press release from the company stating they had completed the trial, and “the results of the clinical trial provide support for additional studies.” However, since that time, there has been no additional information published about it.
Is the trial supported by the FDA since it’s on ClinicalTrials.gov?
It’s important to note that just because something is registered on that site, it does not mean that clinical trial is working with larger, comprehensive regulatory agencies like the FDA or EMA that have robust controls and requirements focused first and foremost on safety. In this case, the study was approved to be run by the Mexican regulatory authority COFEPRIS, but there is no public information available about any published data from the study. We could not find anything about safety or efficacy.
We hope that the data analysis will be published, and will update with any new information. To stay up to day with the latest research in HIE, be sure to check out our other blog posts, and our clinical trial and research study hub.
How much does this experimental therapy cost?
While there is no published cost on the Neurocytonix website that we could find, there are many public GoFundMe campaigns for families raising money for this therapy regimen. The range from these are anywhere from $35,000 – 50,000.
When considering experimental therapies not covered by insurance, or a clinical trial provider, and what a family may choose to pursue and invest in, we want to be sure families have as much information about what they are considering exploring as possible. Safety isn’t just how a medication or device may cause a safety issue or adverse outcome, financial safety of the whole family is critically important to consider as well.
How can I learn more about clinical trials and studies that my child may qualify for?
We have many resources to learn more about clinical trials, research studies, enrollment, design, and what trials are happening that may apply to the HIE community hosted on our Clinical Trial and Research Hub. Our goal is to ensure our families have accurate, vetted information to build health and scientific literacy to make the best decisions in exploring treatments.
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