
B’s Brain Surgery & Medical
Donation protected
Hi, my name is Elizabeth, and I am fundraising for my 11 month old son, Beckett.
Beckett has tuberous sclerosis complex (TSC), which is a rare genetic disease that causes non-cancerous (benign) tumors to grow in the brain and several areas of the body, including the spinal cord, nerves, eyes, lung, heart, kidneys, and skin. The condition is lifelong and has no cure. The biggest symptoms he has related to TSC are epilepsy, infantile/epileptic spasms, and developmental delays.
We found that Beckett was having seizures when he was just 5 weeks old. After 6 months of constantly looking for answers, advocating for our son, and being misdiagnosed with “severe silent reflux” and “Sandifer syndrome,” we switched hospital systems completely in May and had him retested for seizures via an EEG. After an overnight EEG, we were told he was indeed having seizures and extremely abnormal brain activity the whole time. Our whole world felt as if it had fallen apart in an instant.
In May we also discovered that Beckett has TSC through genetic testing, and with that diagnosis came multiple doctors’ appointments weekly, several medications, and daily updates to his neurology team and pediatrician. Beckett’s seizures were still not controlled completely, but we had hope that the different types of meds would eventually help him.
Fast forward to the end of September when we were traveling for the first time with Beckett, there was an extreme uptick in his seizure frequency and intensity. He started having 40+ seizures a day, requiring not only his normal daily medications but also frequent rescue medications as outlined in his Seizure Action Plan. Nothing worked. He lost interest in his toys, he wasn’t smiling/laughing/cooing anymore, and he had a blank stare most days. He was deteriorating before our eyes. His seizures became more intense and frequent to the point that he would stop breathing and his lips began turning blue with every seizure. That’s when we went to the ER at Texas Children’s Hospital (TCH) in Houston.
We were admitted to the Epilepsy Monitoring Unit (EMU) and have been at TCH for almost two weeks. Beckett has undergone intense and frequent testing, ranging from various brain scans to labs to EEGs. Neurosurgeons and epileptologists have come in and out of Beckett’s room frequently, doing their best to get his seizures cooled down and under control as much as they can. His seizures are still uncontrolled despite new strong medications at high doses.
This leads us to brain surgery. Medications didn’t work and nothing else we have tried is working to get Beckett’s seizures under control and for him to have his quality of life back. The neurology/neurosurgery team spoke with us about this option, and after much prayer and discussion, we know it is the best course of action for Beckett to get his life back. The tentative surgery date is 10/19/2023, and we are excited that Beckett will get such a life-changing gift as his 1st birthday approaches. The surgery is going to be a Temporal-Parietal-Occipital Disconnection (TPO; you can read more about it here: https://www.texaschildrens.org/departments/epilepsy-center/diagnosis-and-treatment/temporal-parietal-occipital-disconnection).
We are asking for help for his surgery and medical bills as it has been a very expensive journey. All donations will be used strictly for Beckett’s surgery and any other medical-related expenses.
If you’d like to give another way, my Venmo is
@eliestnic.
We are thankful that Beckett is getting the help he needs to get better. We also thank you for your constant and passionate prayers for our sweet baby. Thank you for your love and support. We appreciate it and we look forward to updating you with Beckett’s positive progress in the near future.
love,
Nic, Elizabeth, & Beckett
Organizer

Elizabeth B
Organizer
Bammel, TX