Gabriel's Journey with Epilepsy
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Our beautiful, baby boy Gabriel Alexander, was diagnosed with focal epilepsy at seven months old. He began having seizure like activity at three months old, but after normal test results his Dr. wasn't concerned.
Gabriel was sick with a cold in February and asleep for the night. He woke up around ten pm and was his happy self laughing and smiling at us, then without warning unconscious, shaking, and gasping for air. We didn't know what was happening and thought our Gabriel was dying in our arms. Over twenty minutes later an ambulance arrived and was able to stabilize him. He had a complex partial seizure that turned into a generalized seizure that night. February 21, 2015 is a day we will never forget, and the day his life changed completely.
This time his Dr. believed it to be something related to the illness, he tested posotive for RSV. His bloodwork was normal, along with two normal EEG's. We all prayed that it was possibly a febrile seizure or related to the illness. Thinking the worst was behind him we never expected him to continue having seizures.
Gabriel has both simple and complex partial seizures, and they do not stop on their own. Due to the severity of uncontrolled seizures every episode is considered an emergency. EMS has to come and rescue medicine is administered to stop them. Every second that passes during his seizures puts him in danger of permant brain damage.
Gabriel has had extensive testing done multiple times to figure out why he has seizures. We are currently fighting with his insurance to approve genetic testing.
He is so strong and brave for such a little guy. Through every seizure, test, poke, examination, hospital stay, blood work, our sweet baby has dealt with so much in his short life of only nine months.
There is still no reason or family history causing the seizures. Our plan of treatment was to hold off on a daily medication for seizure control until we had answers.
All of that changed though during Gabriel's last seizure, he was in status for over an hour. He had back to back seizures that couldn't be stopped by four different rescue meds. He stopped breathing on his own, and at one point we thought we were going to lose him. Days later when he was finally stable, we were so afraid our Gabriel would never be the same again with possible brain damage from everything he had been through.
Since then we've had no other choices for treatment in Pennsylvania besides a daily medication given twice a day that continues to be raised in dosage. It has unknown and possibly debilitating side effects for his development. Not to mention how the medication processes through his growing organs and body.
The medication is not covered by his insurance and costs $300 a month. We are seeking other treatments that do not have side effects and will not delay and possibly stop his development, along with second opinions in another state. Gabriel has an older brother Noah, that loves him dearly and does not want his baby brother to stop smiling at him, stop playing with him, or to change after his seizures and from the medication.
We are praying to be able to make a move out of state to better treat Gabriel and give him the best chance and healthiest fight through his diagnosis of epilepsy. As his parents we want to provide every option to care for our baby, but we are struggling to do so. Insurance has paid for as much as they "medically necessarily" have to and our state has limited treatments available.
Any support from you for Gabriel's condition, treatment, moving out of state, and a seizure monitor to keep him safe through the night, will be a true blessing to him.
We thank you for taking the time to hear Gabriel's story, to open your hearts, and provide selfless support for our baby.
God Bless & Thank you,
Gabriel, Brandon, Nicole, and Noah
Gabriel was sick with a cold in February and asleep for the night. He woke up around ten pm and was his happy self laughing and smiling at us, then without warning unconscious, shaking, and gasping for air. We didn't know what was happening and thought our Gabriel was dying in our arms. Over twenty minutes later an ambulance arrived and was able to stabilize him. He had a complex partial seizure that turned into a generalized seizure that night. February 21, 2015 is a day we will never forget, and the day his life changed completely.
This time his Dr. believed it to be something related to the illness, he tested posotive for RSV. His bloodwork was normal, along with two normal EEG's. We all prayed that it was possibly a febrile seizure or related to the illness. Thinking the worst was behind him we never expected him to continue having seizures.
Gabriel has both simple and complex partial seizures, and they do not stop on their own. Due to the severity of uncontrolled seizures every episode is considered an emergency. EMS has to come and rescue medicine is administered to stop them. Every second that passes during his seizures puts him in danger of permant brain damage.
Gabriel has had extensive testing done multiple times to figure out why he has seizures. We are currently fighting with his insurance to approve genetic testing.
He is so strong and brave for such a little guy. Through every seizure, test, poke, examination, hospital stay, blood work, our sweet baby has dealt with so much in his short life of only nine months.
There is still no reason or family history causing the seizures. Our plan of treatment was to hold off on a daily medication for seizure control until we had answers.
All of that changed though during Gabriel's last seizure, he was in status for over an hour. He had back to back seizures that couldn't be stopped by four different rescue meds. He stopped breathing on his own, and at one point we thought we were going to lose him. Days later when he was finally stable, we were so afraid our Gabriel would never be the same again with possible brain damage from everything he had been through.
Since then we've had no other choices for treatment in Pennsylvania besides a daily medication given twice a day that continues to be raised in dosage. It has unknown and possibly debilitating side effects for his development. Not to mention how the medication processes through his growing organs and body.
The medication is not covered by his insurance and costs $300 a month. We are seeking other treatments that do not have side effects and will not delay and possibly stop his development, along with second opinions in another state. Gabriel has an older brother Noah, that loves him dearly and does not want his baby brother to stop smiling at him, stop playing with him, or to change after his seizures and from the medication.
We are praying to be able to make a move out of state to better treat Gabriel and give him the best chance and healthiest fight through his diagnosis of epilepsy. As his parents we want to provide every option to care for our baby, but we are struggling to do so. Insurance has paid for as much as they "medically necessarily" have to and our state has limited treatments available.
Any support from you for Gabriel's condition, treatment, moving out of state, and a seizure monitor to keep him safe through the night, will be a true blessing to him.
We thank you for taking the time to hear Gabriel's story, to open your hearts, and provide selfless support for our baby.
God Bless & Thank you,
Gabriel, Brandon, Nicole, and Noah
Organizer
Nicole Badamo
Organizer
Pittsburgh, PA