Jonah's Story
Jonah Finn Amor was a beautiful, strong, and happy little man. He came into this world in June of 2016 with a fully formed mohawk. During his first year of life, Jonah developed a deep love for music, his mommies, his big sister, and all his people, including Elmo and friends. He became famous for his hair and his dancing skills. In between dance parties, he loved to walk his doggy, play ball, make phone calls, suck his binky, eat pancakes with syrup, and drink “ilk.” By his second year of life, he was learning how to do pull ups and push-ups, hula hoop, ride trikes and scooters, karaoke, show good manners, and speak Portuguese.
One morning, two months before his second birthday, Jonah suffered a prolonged seizure and partial paralysis. He was rushed to Boston Children’s Hospital, where an MRI revealed a brain tumor in his right parietal lobe. The tumor was completely resected, and cerebral spinal fluid showed no evidence of disease spread. However, pathology revealed an Embryonal Tumor with Multilayered Rosettes (ETMR), an extremely rare tumor with a very dismal prognosis, even after gross total resection. The diagnosis devastated his people, with limited and debilitating treatment options being all that are currently available.
Jonah began his treatment in May of 2018 at Boston Children’s Hospital and Dana Farber Cancer Institute. The goal of this treatment was to save Jonah’s life by removing disease and preventing further spread. Short of that, the aim was to prolong his happy life for as long as possible, with the haunting knowledge that the median survival after the diagnosis of ETMR is less than one year, and intense surgical resections, chemotherapy and radiation potentially introduce serious adverse effects, some with consequential lifetime challenges.
After recovering from the surgical resection of his tumor, Jonah had surgeries to insert a central venous catheter for intravenous delivery, an Ommaya reservoir for intracerebral ventricular delivery, and a G-tube for feeding. He then endured 4 cycles of rigorous treatment with 7 chemotherapeutics over 4 months. During these months, Jonah became very sick from the treatments and spent most of his days and nights in the hospital, requiring many blood transfusions, copious pain management, and antibiotics. During month 4, MRI revealed that he had suffered local recurrence of disease.
After a second surgical resection in September of 2018, Jonah recovered his strength and returned home. Two weeks later, he began proton radiation at Massachusetts General Hospital, which involved anesthetized treatment every day for 6 weeks. During and post radiation, Jonah was treated with experimental drugs, based on emerging preclinical research and clinical data. The extensive chemotherapy left Jonah with a hearing deficit.
Two months after completion of radiation, and while on experimental therapies, Jonah suffered a second local recurrence of disease. He underwent a third craniotomy with complete tumor resection in March of 2019, followed by more radiation and chemotherapy. In July of 2019, a new and distal brain tumor was detected by MRI and Jonah began 6 weeks of whole brain and spine radiation therapy, with concomitant chemotherapy followed by many months of chemotherapies, steroids, physical, occupational, and speech therapy. By July of 2020, the new tumor had progressed to the point of severely compromising Jonah's ability to stand or walk. Jonah then underwent three craniotomies with sub-total tumor resections in August and November of 2020, and January of 2021. Throughout these months, Jonah was also treated with intensive radiation therapy, various experimental targeted and chemotherapies, and steroids.
In March of 2021, a CT scan revealed that Jonah’s disease had spread to his chest and lungs. He underwent surgical resection of lung tumors for biopsy and confirmation of ETMR. After recovery from surgery, Jonah continued his daily treatments with several different experimental medicines, and therapies, as strength allowed. Slowly, he lost motor and respiratory functions, with his sweet soul departing his body on November 26, 2021, in the arms of his mommies and his sister.
Jonah's fighting spirit was incredibly strong, and he absolutely adored his life and his people. His smiles, laughter, and sweet voice lit up the world around him. During his last year of life, cells from Jonah's tumor resections were successfully cultured in an established line which is used in research laboratories throughout the world, in search of new treatments for ETMR. This is one of Jonah’s many gifts to humankind. Jonah’s people continue to fight ETMR in his honor, tirelessly searching for new ideas for treatments and connecting with research scientists and clinicians that are pursuing targeted drugs and combinations for this devastating cancer.
Brain tumors are the leading cause of cancer death in childhood. One of the reasons these children face high mortality rates is that preclinical research aimed specifically at pediatric brain tumors has not generated sufficient advances that have translated into robust clinical benefits. Furthermore, for cancers such as ETMR, the extreme rarity of these diagnoses is an impediment to research investment in targeted therapies due to lack of incentive for commercial development.
Jonah is the fighting spirit of every beautiful child whose young life has been altered, challenged and threatened by this cancer. We are the parents, families, friends, teachers, nurses, providers, doctors and scientists who will never stop fighting at their side. Here, we give more than love and hope and prayers. Here, we offer generous support to fund dedicated and ground-breaking research in ETMR and other rare brain tumors of early childhood. Here we foster change in discovery strategies and new directions, and we celebrate every advancement towards a cure. We are The Jonah Finn Foundation.
We invite you to join our fight and contribute to our goals of raising awareness and money in support of much needed preclinical research in the areas of ETMR and other rare brain tumors of early childhood. All proceeds will go directly to support novel and focused preclinical research in these areas. With your generous contributions, we can help save precious children like Jonah. We can work together to offer a brighter and better tomorrow for children suffering with this disease now and in the future.
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