At the age of 2, Bobby was diagnosed with Refractory Epilepsy. That means his seizures can't be controlled with medication. Over the past 10 years he has become increasingly more drug resistant with the seizures lasting longer. Putting more strain on him emotionally, physically and his memory is worse.
Due to poor seizure control, Bobby could have been a a candidate for a very invasive surgery called Temporal Lobe Resection with a plan to resect, or remove the portion of his brain, casuing the uncontrolled seizures. To have this surgery, the right side of the brain has to be healthy enough to help the left recover. From recent testing, doctors have learned that the seizures from Bobby's left lobe have spread to the right. He is unable to have this surgery.
I however am not giving up. Since there are no surgical options and instead of a 14th new drug with its devastating side effects I am praying to start Bobby on CBD oil. Medical Marijuana drops. Bobby's Neurologist in Saint Louis firmly believes this could help Bobby and has given him his card to be able to purchase the oil.
To me, watching Bobby have seizures is so heartbreaking in itself but there is another problem. Bobby has frequent Epeliptic Auras, sometimes lasting all day long and through the night with horrible nightmares. An Aura is a type of simple focal seizure that sometimes becomes a generalised seizure. Auras are usually strange sensations, such as a strange smell, funny taste, or strange ‘rising’ feeling in the stomach. The person will be conscious and aware that the aura is happening. Auras are also sometimes called ‘warnings’ because they warn the person that a generalised seizure is coming.
Unfortunatley, Bobby's Auras make him feel scared. He is constantly scared, afraid and has the constant fear of dying or being killed. He is even afraid of walking to the bathroom on his own because he is afraid of a seizure happening on the way with no one around.
This is my plea. The Medical Oil is not covered by insurance. It costs $800+ depending on his weight at the time he gets it. This GoFundMe has been established to try to help raise the money needed for Bobby to obtain the medication, try it, possibly enjoy life seizure free and someday be able to drive a backhoe. For me, for him not to be constantly scared would be more than I could ever ask for. For him to go through life constantly scared of dying absolutely rips my heart to pieces daily.
I am a single mother on a very fixed income that barely gets us by. Most months when there is alot of travel to doctors and hospital stays, it doesn't. Bobby has a 10 year old brother, Joey.
I am thankful for your thoughts, prayers and generosity. Please share and remember even the smallest donation helps, I appreciate your kindness.
- Shari Miranda
- David Calandrillo
- Rachael Hastie
- David Calandrillo
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