Help Caleb in his brain surgery recovery
Donation protected
Caleb has been having seizures since he was 18 months old and was diagnosed with epilepsy, specifically caused by focal cortical dysplasia. Unfortunately his focal cortical dysplasia is drug resistant. In 2018, his seizures were occurring daily, sometimes multiple times a day. It was determined surgery needed to be done to remove the origin of the tissue that was causing his seizures. This tissue was in his sensory part of his brain. The surgery went as planned and we all were hopeful that Caleb would be seizure free.
Summer of 2019, Caleb started having seizures again. He was already on 3 seizure meds, plus a new seizure med via IV. Even with the fourth medicine, the seizures were still daily. Further testing determined the focal cortical dysplasia was in the left motor cortex. More testing, consultations with doctors and surgeons were done to confirm surgery was the best option. Caleb’s seizures continued to get worse and if surgery wasn’t performed, he would face a life of uncontrollable seizures. Caleb wasn’t able to go to school, his seizures often made him sick and he was just not living the life a 10 year old should. The consequences of removing a majority of the left cortex would leave his right side with disability. We feared if no action was taken, he could suffer from further brain injury, death from his seizures along with not being able to live his life to the fullest.
Caleb underwent the surgery on 2/4/20, right now he is paralyzed on the right side of his body. Through intense daily rehab, we are hopeful he will regain use of his right side of his body including face, leg, arm and hand. His road to recovery won’t be easy and he is going through occupational therapy, physical therapy and speech therapy. He has to learn how to swallow, speak and how to function with his limitations of paralysis. At this time, we are unsure what he will regain back but we are hopeful through a long road of time, rehab and recovery that he will regain movement.
Caleb’s mom, Amanda, has to focus on caring for him 24/7 for the unforeseeable future, therefore she is not able to work. While each day is different, there will always be expenses for accommodations for his new way of living. This includes handicap accessible areas in the home and transportation along with basic living expenses. We started this page to help support his future needs for recovery.
This kiddo has been through so much with the ups and downs of seizures, surgeries and now with a disability on his right side. The recovery ahead with this new body is going to be very long and will be very hard. We’re all so heartbroken that he’s had to endure all of this and we are so hopeful he will recover and have a healthy seizure-free life and someday (soon) walk again. Caleb’s mom, Amanda, is an angel on this earth. She’s selfless and dedicated to Caleb and such an advocate for him. She is an amazing person who will do anything and everything she can to help her son.
We are all looking forward to the day where Caleb can enjoy his favorite activities like camping, swimming, riding his bike and crushing some video games.
We want to thank you all for your love, kind words, kind gestures and prayers!
A little more about Caleb…
Honestly, he’s the strongest kid I know. Along with his focal cortical dysplasia, Caleb is on the autism spectrum. Although the road may be windy and bumpy, Caleb always perseveres and he is truly inspiring. At the end of the day, he’s a fun-loving, goofy kid who loves telling his Gaga to drop out (of playing video games with him), watching Avengers (particularly Iron Man), swimming, camping, Legos and riding his bike. We all want to do anything we can to make sure he can get back to doing those things and just have fun and enjoy life.
Summer of 2019, Caleb started having seizures again. He was already on 3 seizure meds, plus a new seizure med via IV. Even with the fourth medicine, the seizures were still daily. Further testing determined the focal cortical dysplasia was in the left motor cortex. More testing, consultations with doctors and surgeons were done to confirm surgery was the best option. Caleb’s seizures continued to get worse and if surgery wasn’t performed, he would face a life of uncontrollable seizures. Caleb wasn’t able to go to school, his seizures often made him sick and he was just not living the life a 10 year old should. The consequences of removing a majority of the left cortex would leave his right side with disability. We feared if no action was taken, he could suffer from further brain injury, death from his seizures along with not being able to live his life to the fullest.
Caleb underwent the surgery on 2/4/20, right now he is paralyzed on the right side of his body. Through intense daily rehab, we are hopeful he will regain use of his right side of his body including face, leg, arm and hand. His road to recovery won’t be easy and he is going through occupational therapy, physical therapy and speech therapy. He has to learn how to swallow, speak and how to function with his limitations of paralysis. At this time, we are unsure what he will regain back but we are hopeful through a long road of time, rehab and recovery that he will regain movement.
Caleb’s mom, Amanda, has to focus on caring for him 24/7 for the unforeseeable future, therefore she is not able to work. While each day is different, there will always be expenses for accommodations for his new way of living. This includes handicap accessible areas in the home and transportation along with basic living expenses. We started this page to help support his future needs for recovery.
This kiddo has been through so much with the ups and downs of seizures, surgeries and now with a disability on his right side. The recovery ahead with this new body is going to be very long and will be very hard. We’re all so heartbroken that he’s had to endure all of this and we are so hopeful he will recover and have a healthy seizure-free life and someday (soon) walk again. Caleb’s mom, Amanda, is an angel on this earth. She’s selfless and dedicated to Caleb and such an advocate for him. She is an amazing person who will do anything and everything she can to help her son.
We are all looking forward to the day where Caleb can enjoy his favorite activities like camping, swimming, riding his bike and crushing some video games.
We want to thank you all for your love, kind words, kind gestures and prayers!
A little more about Caleb…
Honestly, he’s the strongest kid I know. Along with his focal cortical dysplasia, Caleb is on the autism spectrum. Although the road may be windy and bumpy, Caleb always perseveres and he is truly inspiring. At the end of the day, he’s a fun-loving, goofy kid who loves telling his Gaga to drop out (of playing video games with him), watching Avengers (particularly Iron Man), swimming, camping, Legos and riding his bike. We all want to do anything we can to make sure he can get back to doing those things and just have fun and enjoy life.
Organizer
Calebs Family
Organizer
Madison, WI