In August 2016, six-year-old Jakob was admitted to Renown Children's Hospital with what seemed like a common ear infection. Jakob's condition quickly progressed, and he started experiencing neurological symptoms such as difficulty speaking and a full-body shutdown.
Doctors, neurologists and specialists from Renown worked with doctors from Stanford, where he was ultimately diagnosed with Bickerstaff brainstem encephalitis (BBE). BBE is a rare, autoimmune response that attacks the nerves in the body due to an acute illness such as a cold, flu or, in Jakob's case, an ear infection.
Jakob could not breathe or eat and experienced paralysis on the side of his face, throat, stomach, bowels, lungs and legs. In addition, he started to rapidly lose weight as well as body function. Jakob lost half his body weight which resulted in the need for a Gastrostomy tube. This device is placed surgically and gives direct access to the stomach to give the child the nutrition needed. He also needed occupational therapy, and after three and a half months of ICU respiratory therapy, surgeries and treatments, he was released home to regain his strength.
Anica, Jakob's mom, said, "If it were not for the quick response and unconditional support and compassion from the team at Renown, Jakob would not be here today." Jakob's family is forever grateful to the staff, community and expertise at Renown for their unwavering commitment to their son and family during their most trying time in life.
"When I met Jakob on the first day of his illness, so much was unknown. My team and I were worried, as his symptoms were very unusual. His rapid deterioration, after being a perfectly healthy child, was clearly terrifying for his parents. Handing over a child's care to a team of strangers is one of the scariest things that can happen to parents,” said Dr. Kris Deeter, Physician in Chief at Renown Children’s Hospital. “However, Anica and Jeremiah were also very clear that they did not want Jakob transferred somewhere else. So, we used all our resources to care for him, arrive at a diagnosis, and start aggressive therapies. They listened to every word we said, educated themselves, and became partners in Jakob's care. We all became part of Team Jakob, and soon, he proved to us just how strong he was."
Today, Jakob is 13 years old and thriving in every aspect of his life. He is currently on the honor roll in school and finds joy in his newfound passion for the violin. He loves spending his free time learning about mixing music, making new friends and traveling to different parts of the country. This summer, he will travel to Europe to explore his passion for culture.
The family says, "We owe it all to the family and staff at Renown."
Renown Health is focused on being the destination for all your family's health and healthcare needs. As a not-for-profit health system, Renown relies heavily on community funding. If you are interested in supporting Renown Children's Hospital and kids like Jakob, please consider giving to Renown Health Foundation.
Donations are accepted in the following ways:
