Faithful Friday-Lucca’s World: The Strength of A Mother’s Love
by: Debbie waltz
Chronicling one family’s struggle to find an effective treatment for their child’s pediatric cerebral palsy, the movie “Lucca’s World” is a poignant adaptation of Barbara Anderson’s autobiography, “The Two Hemispheres of Lucca.” Fueled by guilt and a mother’s love, Barbara uses her investigative skills to research different ways to help her son. During a journalistic interview for work, Barbara is introduced to the use of the Cytotron. This therapeutic approach involved the use of a cylindrical device, similar in design to an MRI machine, to deliver a series of treatments aimed at stimulating the growth of new neural pathways and connections within the brain areas that had been damaged.
Determined to get him to treatment, Barbara is willing to do anything, including flying halfway around the world. There is only one problem. Considering the severity of Lucca’s cerebral palsy and his tendency towards seizures, the many hours required for air travel pose a significant risk to his health and well-being. Despite this, Barbara and her husband Andres pushe through, believing that the treatment is worth the risk – enlisting the help of his doctor to help her create a checklist of all her son’s necessities for the trip. Unfortunately, and quite predictably, their son suffered a seizure halfway through their trip, immediately throwing their travel plans into disarray and creating a dire situation. Against medical advice in Paris, they continue their journey to India.
Once they arrive, the family is eager to begin their son’s treatment. After reviewing Lucca’s scans, Dr. Jaramillo (played by Bill Rogers) begins taking precise measurements on where the therapies should be targeted to treat Lucca’s lesion on the brain. Seeing no obvious signs of improvement in her son, she questioned their decision. The bustling city sounds outside did nothing to ease the turmoil in her mind as she wondered if uprooting their lives had been a mistake, considering Lucca’s persistent anxiety and illness. Listening to her concerns, Andres encourages her to get some sleep and follow through with the treatments since they’re already there. Despite experiencing a seizure, they soon experienced a breakthrough- when Lucca learned to suckle.
“Sucking is one of the first human reflexes,” Kumar says.”That’s the first and only thing newborn babies need to know..” Meanwhile, his improvements continue.
While delving into the significant scientific advancements in medicine that have possible cures (for cancer ) and growing treatments for neurological conditions such as epilepsy and cerebral palsy, this movie also poignantly highlights the internal struggles that parents often endure when fighting for their children’s well-being and optimal care. Though Barbara (played by Barbara Mori) and Andres (Juan Pablo Medina) disagree on treatment, he stands with his wife in solidarity, knowing she feels responsible for causing his disability. The memory of her passive behavior during labor haunted her; she now believed her lack of effort directly contributed to his oxygen deprivation.
This movie shows how easily desperate parents can be taken advantage of if they don’t do their research. They must make sure projects are purposely funded and have undergone the proper independent review. I’m not saying you shouldn’t go to other countries seeking treatment, but if they ask for grand amounts of money for things not related to a treatment be wary.
I have some experience with early trials of a medication.
In my case, the baclofen pump was a new form of treatment for spasms and tightness in the 1990’s. Having observed significant improvements in patients who took the medication orally, they subsequently initiated a treatment program, utilizing an internally implanted (intrathecal) pump for drug delivery. Each patient’s medication dosage was determined and programmed individually by their physician, necessitating a periodic refill to maintain the prescribed treatment regimen. The higher the dosage, the more refills.
Eventually, I entered a trial. During the trial, they essentially administered the medication via a spinal tap over several hours to observe its overall impact on my brain, bypassing my body’s normal absorption process to directly assess its effects. Due to the successful outcome of the initial procedure, I opted to undergo the surgery to receive the pump implant. It is important to note that, given the early nature of the treatment at the time, we lacked complete certainty regarding its long-term consequences (over several years) and potential effects on patients.
Before I share my personal experience with this medication, it’s crucial to recall, as previously stated, that the prescribed dosage is always customized for each patient, carefully considering their unique tolerance level and the specific intensity of their spasticity symptoms. Being of high spasticity, my parents had difficulty dressing me and handling my spasms, therefore I required a high dose. The dosage worked well at first, but as expected, I developed a tolerance for it. I felt myself slipping into a depression as the years went by. At that point in my life, I was a college student immersed in the demanding process of earning my academic degree. (I had already completed getting my Associate’s degree in General Studies and was in the process of getting my Bachelor’s in English and Communications. I mentioned this to my neurologist, concerned that this may be a side effect of having such a high dosage. They couldn’t explain it, as there was no clinical evidence of the neurological effects of baclofen in its long-term use. The doctors suggested it was because of the stress of pursuing a college degree.
Meanwhile, I slipped deeper and deeper into myself, becoming an observer of my own life. I had a gut feeling that something was terribly wrong, and I persistently communicated my experiences to those around me, repeatedly expressing my concerns. I tried whatever I could to minimize my symptoms and continue my studies- including counseling and medication. (Truthfully, no one really knew the severity of my symptoms because it was truly a mental battle for me. I tend to keep stuff to myself.) My faith kept me strong.
Over a decade later, a bacterial infection in my back led to emergency surgery; surgeons removed the infection and the pump. The pump itself was affected and had to be removed. Hours later in recovery, I was laughing and talking more than usual. My parents were amazed- they had not heard me laugh like that in years! In the weeks following my surgery, my neurologist urged me to consider getting the pump installed again. I adamantly rejected the offer; since then, I have had a job working with the State Department, moved into an apartment, moved to Virginia, etc.. I now take an alternative oral medication. When the oral baclofen started to affect my brain again, I began going to another neurologist who suggested another oral medication. I still take that medication now with a separate medication specifically for spasms. This medication seems to have less effect on my fogginess, allowing me to finish my book.
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Articles referred to in this blog:
https://readysteadycut.com/2025/01/31/luccas-world-review/
https://readysteadycut.com/2025/01/31/luccas-world-true-story-netflix/