Eli's Fight Against Infant Botulism
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Hello, I’m Nelsen and I’m reaching out on behalf of my daughter Stephanie and her husband Ian. One week ago, they were enjoying their perfectly healthy 3-month old baby boy. Currently, their baby Eli is fighting for his life in PICU at Baptist hospital in San Antonio, TX. He was admitted to the hospital after not
eating and being extremely lethargic. Doctors were running several of tests trying to figure out what was causing Eli’s body to rapidly shut down. He lost the ability to swallow and required intubation to breathe on his own, as well as a feeding tube. After several days of Eli’s health and functioning deteriorating, he was diagnosed with infant botulism type B.
Infant botulism is a rare disease that only affects 1 out of 1,000,000 infants. It is life threatening and requires a specific medication from CA that costs $43,000 a vial. Once this life saving medication was administered, Eli began showing small improvements, going from complete paralysis to making slight movements in his toes, arms and legs.
The road to progress will be slow and will require multiple therapies, including Respiratory Therapy, Speech Therapy to regain the ability to swallow, Physical Therapy to regain movement. We are hopeful that Eli will continue to improve, and he is receiving excellent care from the amazing staff of doctors and nurses at Baptist hospital.
As expected, Eli’s parents are consumed with his care at this point, and not at the point of facing the enormous medical expenses that face them. Many friends and family feel helpless, especially during the time of COVID-19 when we are not able to visit or offer support. We thought this would be a great way to show our love and support the Johnstone family during the most difficult time of their lives. We
would like to offset their medical expenses a bit so that they can continue to focus on providing the best possible care for baby Eli. Thank you for your consideration and support. It truly means the world to us as baby Eli continues to fight for his life.
eating and being extremely lethargic. Doctors were running several of tests trying to figure out what was causing Eli’s body to rapidly shut down. He lost the ability to swallow and required intubation to breathe on his own, as well as a feeding tube. After several days of Eli’s health and functioning deteriorating, he was diagnosed with infant botulism type B.
Infant botulism is a rare disease that only affects 1 out of 1,000,000 infants. It is life threatening and requires a specific medication from CA that costs $43,000 a vial. Once this life saving medication was administered, Eli began showing small improvements, going from complete paralysis to making slight movements in his toes, arms and legs.
The road to progress will be slow and will require multiple therapies, including Respiratory Therapy, Speech Therapy to regain the ability to swallow, Physical Therapy to regain movement. We are hopeful that Eli will continue to improve, and he is receiving excellent care from the amazing staff of doctors and nurses at Baptist hospital.
As expected, Eli’s parents are consumed with his care at this point, and not at the point of facing the enormous medical expenses that face them. Many friends and family feel helpless, especially during the time of COVID-19 when we are not able to visit or offer support. We thought this would be a great way to show our love and support the Johnstone family during the most difficult time of their lives. We
would like to offset their medical expenses a bit so that they can continue to focus on providing the best possible care for baby Eli. Thank you for your consideration and support. It truly means the world to us as baby Eli continues to fight for his life.
Organizer and beneficiary
Stephanie Johnstone
Organizer
Edinburg, TX
Stephanie Johnstone
Beneficiary
