Zac Eckworth, an 11-year-old boy from Hampshire, has been bravely battling cancer for over a decade. When he was just 14 months old, his parents noticed that his eye was wobbling and took him to the hospital. To their shock, doctors diagnosed him with an optic nerve glioma, a type of brain tumor. Since then, Zac has endured countless rounds of chemotherapy, sacrificing his childhood for treatment that could help save his life.
Despite his visual impairment caused by the tumor, Zac has found hope in a “life-changing” drug trial. He has been taking the drug, called dabrafenib, since the age of five. His mother, Miriam, praises the medication for allowing Zac to live a relatively normal life. While the family continues to hope for the best, doctors will closely monitor the tumor’s response once the treatment stops in the next couple of years.
Reflecting on Zac’s journey, Miriam acknowledges the challenges he has faced. As a young boy, it was heartbreaking to see him unable to experience the joys of childhood like his peers. However, she remains optimistic that Zac will recover emotionally from his difficult experiences and lead a fulfilling life.
Miriam and her husband, Colin, first noticed Zac’s symptoms when they observed his eye wobbling. Concerned, they immediately took him to the GP, who referred him to specialists at Great Ormond Street Hospital in London. After several rounds of chemotherapy, Zac’s tumor remained stable for a while. Unfortunately, it eventually started growing again, necessitating further treatment.
Despite his ongoing battle with cancer and visual impairment, Zac has managed to maintain a good quality of life. He has various hobbies, including karate, where he has almost achieved a black belt. He also enjoys playing the keyboard, DJing, playing video games, and participating in goal ball, a visually impaired sport. Zac’s school is supportive, providing him with the necessary tools, such as learning braille and receiving large print text, to succeed academically.
Optic nerve gliomas typically affect children and are characterized by slow growth. The tumor arises in or around the optic nerve, causing vision problems as it presses against the nerve. Around 75% of cases are diagnosed in children and teenagers. While the exact cause of brain tumors is unknown, 50% of optic nerve gliomas in children and teenagers are associated with a genetic condition called Neurofibromatosis 1 (NF1). Doctors can diagnose optic nerve gliomas through various assessments and tests, including CT and MRI scans.
Treatment options for optic nerve gliomas include chemotherapy, radiotherapy, and surgery. Chemotherapy aims to shrink and stabilize the tumor, while radiotherapy is typically offered as a follow-up to chemotherapy. However, radiotherapy is not recommended for patients with NF1 due to the risk of secondary tumors. Surgery may not always be possible due to the potential for damage to sensitive areas.
Zac’s journey is a testament to his resilience and the advancements in medical research. The experimental drug, dabrafenib, has given him and his family more quality time together. They remain grateful for the opportunity to enjoy the activities that define childhood and hope for a bright future for Zac.
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