Junior Devin Dobroth opens up about living with a rare brain disease.

[dropcap size=small]D[/dropcap]evin Dobroth was brought into this world on a cold January day in 2002. He grew as a happy baby boy, with no health complications besides the occasional cold.

But by the time Devin was a year and a half old, stomach pains caused him to go the hospital on a regular basis with no clear solution for them. Devin suffered for six more years until doctors found out what was causing his issues: the brain. Doctors discovered that Devin had an arachnoid cyst, membrane sac fluids that cover the brain, that was in between his cerebellum and his skull, which caused him to have intense headaches and balance issues.

Devin, who is currently a junior, underwent multiple surgeries at UCLA under the care of his first neurosurgeon, Doctor Michael Lazarus, that tried to rid his skull of the cysts. His first surgery took place in UCLA, when Devin was only in the first grade, and as the surgeries continued, they left microbleeds in his brain that caused blood to flow into his cerebrospinal fluid, which is a fluid that is made, absorbed, and flows within ventricles in the brain. This caused lesions to form on Dobroth’s brain that created a rare condition called superficial siderosis, a degenerative brain disease that one in three million people have the chance of developing in their lifetime, with only 270 known cases reported around the world by 2006.

Superficial siderosis is usually found in older people suffering from Alzheimer’s disease or who are reaching the end of their lives, and usually causes loss of eyesight, hearing, the ability to walk and dementia. Fortunately for Devin, when he received the diagnosis in November of 2018, the doctors caught the disease early enough to prevent the diagnosis from spreading and affecting him.

“When we were at Children’s Hospital they all looked at us dumbfounded… because they had never seen it in a child that age,” said Devin’s mom, Sara Dobroth, who is the manager of the Paso Robles Sports Club.

With this information discovered, a life-threatening brain surgery was desperately needed to stop the microbleeds, but the risks of opening up the skull to stop the bleeds, which could introduce more, were too risky for the doctors at UCLA. Doctor Lazarus and Doctor Mersedeh Bahr, a neurologist at UCLA, were both asked to perform the surgery, but both denied it because of the risks.

“It was scary because I wasn’t sure if they were going to find anyone willing to help me,” Devin said.

Without giving up hope, Doctor Bahr wrote a letter to every neurosurgeon in California, which is about 2,314, asking for their help to perform the surgery to save Devin’s life, and got a response back from Doctor Anthony Wang, who is a neurological surgeon at UCLA. Wang was touched by Bahr’s emotional outreach and decided to take the risk of the surgery to save Dobroth’s life. Wang performed the surgery on Dec. 28, 2018 with optimistic results.

“They were able to find the two areas suspect for bleeds and the left frontal pain that Devin has had for a year now is gone… we have more hope now,” Sara Dobroth said.

Over the course of the ten years since Devin’s first diagnosis, up until the most recent one in November, he has had 11 surgeries and nine craniotomies, with an MRI that has to take place once a month down at UCLA.

“It’s definitely hard being away from people, because when you feel bad you want to be hanging out with people that you enjoy… and you can’t really do that when you’re hours away in the hospital,” Devin said.

Being away from friends and family hard, but Devin also misses weeks of school at a time due to his surgeries. Coach Michael Sauret, the varsity swim coach and Devin’s online teacher has been tutoring him for the last three months to help him stay caught up on school.

“My job is to ensure that Devin has access to the same education as everyone else. He’s a very hard worker and it does make it much easier the fact that he desires to work hard and do well with his grades,” Sauret said.

Despite missing weeks of school, Devin does not let himself take the easy way out. All throughout his school career, he has challenged himself to take honors and AP classes, one day hoping to become a neurosurgeon to help people like him.

To know Devin is to know how light-hearted he is, how he brings joy to the people around him, and how he never puts himself first in any situation.

“Devin always makes his friends and his loved ones his number-one priority… and he has this amazing ability where he is able to put a smile on someone’s face no matter how upset they are. He is also an incredibly kind person… and I think that makes him a beautiful human being, “ said junior Jasmine Rangel, who is Devin’s longtime friend and girlfriend.

Devin has no further surgeries planned for the near future and spends his free time hanging out with friends, going to school, and, most importantly, never giving up on himself.