Benjamin Guadalupe Murillo aka Superman
Benjamin is the third born and the third boy in his family. The whole family was excited to welcome him. There were never any indications of any health concerns throughout the pregnancy. Benji was born, he looked well, at least to his mommy. They took him away almost immediately after he was born. The family was told that Benji was having some complications. They were told he had some type of infection. INFECTION??? how is that, his mommy asked, I mean, he was just born. The family thought oh well, I guess they will start antibiotics and we will be able to take him home shortly. But that wasn’t meant to be. A day and a half after he was born, mom walked into the NICU only to find several doctors at Benjamin’s side. She was given the news that his aorta was almost closed at the point where it starts to curl downward. This was causing his lower body to be some sort of blue color because his blood did not have enough oxygen. Heart surgery was needed immediately. A couple of hours later Benji was airlifted to Children’s Hospital to undergo the procedure. At only a week old Benjamin had open heart surgery, on a by pass machine and all. It was such a hard time for the entire family. After his surgery, mom came to his side, the nurses had not “cleaned” him up just yet when she arrived along with grandpa Elias. The sight was overwhelming, there laid Benji with a large wound on his chest, blood everywhere, tubing coming from his forearms, his wrist, his stomach, his groin, on both sides. Grandpa could not handle it and he had to leave. He would later share that he was unable to sleep for weeks because of what he saw. Mom, however stood there trying to mentally understand what she was seeing. She sat silently next to him as the nurses came in and apologized and cleaned him up. She sat there and began to pray. She prayed the Holy Rosary. Nancy prayed so hard like she had never done before, she was in some sort of a trance. Even to a point that she was physically rocking back and forth. The prayer came to and end and when she opened her eyes Benjamin turned his head in her direction and even though she had quietly prayed and he was heavily sedated, he gave her the biggest smile. Reassuring his momma, “ I got this!” His beautiful radiant smile has now become his signature sign of strength and resilience.
Momma Nancy, too, had a brush with bad health as she fought for her life after contracting a very severe staph infection on her c-section wound. Those were very hard times but Benjamin, being the Superman that he is, made it through. He spent 27 days in the hospital and came home fittingly on Mother’s Day weekend. Life, the family thought, was back to normal. After some time Benjamin was having several jerks throughout the day, lots of them. At only 5 month old and after having an EEG, the family was told Benjamin had Infantile Spasms and was ordered to be admitted to the hospital to start a round of ACTH. It was a steroid medication given as a shot every day to each one of Benjamin’s legs. At first it seemed to be working and Benny was seizure free, but after three weeks the seizures came back. The ACTH was stopped and Benji’s ordeal with epilepsy began.
At 17 months old Benjamin had brain surgery in order to obtain control of his 40 to 50 seizures a day. The idea was to find the area where the seizures where formed and then extract that. Unfortunately the family was told that Benny’s seizures were produced all over his brain. There was however an area in where a large number of seizures were seen. As hard as the decision was they decided to go ahead with the removal of that area in the right frontal side. The seizure did reduce by about 80% and the family was ready to adapt to the fact that seizures where going to be a part of their lives forever. For the last 8 years Benjamin has tried 18 different type of seizure medications all unsuccessful.
On December 31, 2012, right when the family was ready to countdown to the new year, Benji’s daddy, Pablo, told momma that Benny was having a lot of seizures. They rushed to the ER and arrived at 11:59pm and rang in 2013 there. Sadly Benjamin would not stop seizing, they were coming every 21 seconds, this went on for days. Yet again he pulled through, but went home with more medications and even stronger ones. The medications were now so many and so strong that he stopped walking in his gate trainer and was not “here”. Mommy saw how much her boy had lost. Throughout the rest of 2013 he continued to have status episodes in which he would seize for 40 minute to an hour and a half and ended up in the ER each time. Momma was not okay with this, this couldn’t be how life was going to be for her SuperBen.
One night in desperation she got on to the internet and started to browse for medical marijuana. She had heard a little about but wanted to learn more. She read about Charlotte and her experience. At that very moment in the middle of the night, (when we should be resting but for special needs parents we spend hours researching) she filled in all the initial paperwork and the journey began. BenjiBoo started CW on December 18, 2014. Immediately after the first dose momma noticed improvement in her son. They dropped Depakote completely, Benjamin began to walk again, he is more alert, more engaged. It is a beautiful thing. Little by little more and more is being noticed. His seizures although still present, they are not as intense as they use to be, they are fewer and there has not been any more status events. He has gained 4 pounds, it would take almost a year to gain just one, and his vision has improved. Besides the one medication that was dropped, the remainder 3 have been cut by more than half. As momma puts it, Benjamin is now LIVING not just existing! For that the family will always be grateful with GOD, Realm of Caring and all involved in this life changing journey.