Update 4: MAJOR UPDATE - 10/15/2026
Today we received the results of the tests done in Barcelona. There was no positive response to any of the twelve medications, and two caused adverse reactions. These tests confirm that Benedict has no medications that could offer relief for his epilepsy.
We are moving to the final stage before the surgery. This involves magnetoendephalography (MEG), advanced non-invasive brain mapping. We will travel to Florida to see Dr. Eduardo Castillo, who has been pioneering with this technology to assist in specialized cases. (The link below will explain his work in detail.)
After this is complete we will travel back to Barcelona, Spain, for the surgery with Dr. Antonio Russi at the Centro Medico Teknon Hospital. He is recognized as one of the world’s foremost experts in evaluating and treating complex, drug-resistant epilepsy and has pioneered a minimally invasive laser ablation to destroy the abnormal tissue or lesion without needing a traditional open craniotomy. This advanced procedure uses micro-incisions to interrupt the abnormal electrical pathways preventing the seizures from spreading while keeping vital functions intact, something not offered in the U.S. Within the U.S., our options are more invasive and could result in loss of vision due to the location of Benedict’s lesion in the visual cortex, and additionally, his physical activity would be severely restricted for the remainder of his life.
With Dr. Russi’s approach, Benedict will be in the hospital for ten days. There is a possibility for a COMPLETE CURE for Benedict’s epilepsy. He is the first doctor to listen intently, ask a multitude of questions, and provide answers to every question. Attached below is more information about Dr. Russi and this surgery for those interested in learning more.
Now that we have reached this point, I have further information regarding total costs for the remaining surgery and updated the goal to reflect that cost. Please offer whatever help you are able to offer, large or small, as it all makes a difference. Also, share with as many people as you can and ask them to share as well.
And, above all else, please continue with your prayers for Benedict!
https://medigence.com/doctor/neurologist/antonio-russi
https://www.adventhealth.com/md/blogs/magnetoencephalography-meg-improving-patient-care-through-advanced-non-invasive-brain-mapping
Update 3: 10/2 Benedict was able to travel to Lourdes while in Spain, to visit the grotto, churches, and even receive blessings from Pope Leo and get with N 10 ft of him, twice.
We are back in Dallas, awaiting a short trip to Orlando for a MEG scan and interpretation at a specialized facility. That is the last piece of the puzzle Dr Russi needs before we head back to Spain for surgery. We did offer up prayers for everyone who has helped with prayers and financially to make healing possible. We are thankful for each and every one of you.
Update 2: 9/23 We are in Spain, the doctor and staff are incredibly kind and knowledgeable. We're on the second day of running tests on 12 different medicines, one at a time, for seizures to see how they affect him and determine if there is one that might be a good fit for him, all while monitoring real time brain activity with the EEG. He's supposed to sleep a fair bit for best test results, which isn't too difficult with jet lag. B did suffer a seizure while in the airport (not fun) but had many people come over to offer help. Otherwise it's been uneventful.
Update1: Doctors confirmed and Benedict and mom will fly out Sunday, arrive Monday in Barcelona and go straight to check in to the Teknon Medical hospital for the testing phase which will last 3 days, until Thursday, which happens to land on the Feast of Our Lady of Ransom, the biggest celebration in the city, where they celebrate for a whole week!
Our son, Benedict, is diagnosed with a brain tumor that causes him to have severe epilepsy. He has been struggling with the epilepsy for years, and as he has grown older, the seizures and their impact have become much worse. In addition to losing independence, in just the past 6 months, he has suffered several injuries and hospitalizations and faced life-threatening situations due to sudden seizures.
The Challenge with his Treatment
Due to the location of his tumor, his epilepsy has been very difficult to treat. He has not responded to conventional methods, and we've had to seek alternate forms of treatment which are not always covered by insurance and are very expensive. We're in touch with the best worldwide doctor, located in Spain, who has had great success.
Our Next Step: Traveling to Spain
We plan to travel to Spain for very thorough testing using MRI, EEG, and a computer program to understand his brain and test for possible medicines. If none can be found that will control his seizures, then a procedure will be performed to basically deactivate the neurons that are misfiring.
How You Can Help
We are facing massive costs for international travel, specialized testing, and potential surgery. We would greatly appreciate any prayers and financial assistance you can offer to help pay for Benedict's increasingly expensive care.
- Donate: Any amount helps us get Benedict to Spain closer to a cure.
- Share: Please share this link with your friends, family, and community groups.
- Pray: We deeply value your prayers for Benedict's safety and healing.
Thank you so very much for your kindness, generosity, and support!
