Santiago’s Story

Meet Santiago Estevez…a beautiful 7-year-old boy who had to give up the life of a care free child to fight a battle that threatens his life on a daily basis.

At the age of 4, Santiago was diagnosed with metastatic Medulloblastoma. To date he has undergone multiple treatments to treat the brain tumor that include surgical resection, pencil beam radiation therapy, and chemotherapy. Unfortunately, his chemotherapy sessions were prematurely suspended after Santiago developed radiation necrosis to his brain stem. The radiation necrosis happened so suddenly that Santiago’s life completely changed from one day to the next. Since August of 2016, the radiation necrosis has left Santiago in a paralyzed condition, and he is unable to move, speak, swallow, and breath.

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As a result of the damage, he now requires ventilatory support, nutrition via a gastric tube and assistance with all his activities of daily living. In efforts to alleviate the necrosis complications, he underwent 48 sessions of hyperbaric oxygen therapy, 12 weeks of inpatient rehabilitation therapy, and a diaphragmatic pacer insertion to strengthen his breathing muscles and allow for weaning from the ventilator. After 10 surgeries, being sedated under general anesthesia over 100 times, 8 months of ICU admission in St Jude, 2 months of ICU stay in Children’s Hospital in Philadelphia, and suffering from a full cardiac arrest, Santiago finally made it home to Miami in July 2017.

But just as Santiago was assimilating to being back home and the battle began to look promising, his family was told that Santiago developed two new brain tumors. In efforts to find a cure, his family relocated to Orlando where Santiago was treated with radiosurgery. He is currently on experimental immunotherapy in a hospital in Augusta, Georgia. His family travels to Georgia every month via a rental camper to facilitate the continuous treatments he requires. Each trip costs about $2000, which also includes hotel stay expenses. His family is hopeful that the immunotherapy will establish a cure.

Santiago currently requires ventilatory support at night. As a result of him needing mechanical ventilation, he has developed pneumonias that have led to many hospital stays. In addition, it was recently discovered that Santiago is also suffering from cataracts in both eyes which will require surgery to improve his vision, as well as severe hearing loss from damage to the ear drums and nerves in the brain stem that will require hearing aids.

Santiago uses over 1,000 doses of medications administered every month and a vast majority of his care and supplies are not covered by insurance. The extraordinary out-of-pocket medical expenses exceed over $200,000 a year, which do not include any special treatment that may help Santiago recover.

In his short life, Santiago has gone through so much but has proved to be a resilient and brave fighter. He is cognitively 100% with us and understands everything. He is able to communicate with his eyes and his beautiful smile. His smile alone fuels his family with an endless supply of hope and energy to help Santiago recuperate. His parents have put their entire faith on the possibility of a full recovery. They work very hard to provide a happy and safe environment at home for Santiago and are very hopeful that advancements in Stem Cell research can help him in the near future. Santiago’s recovery is a long-term process and his family is committed to doing everything in their power to help him through this battle.

 

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Santiago enjoying a carefree life prior to diagnosis

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Santiago bravely battling cancer and treatment complications

 

Donate to the Santiago Fund