Received Feb 1, 2026
| Type | Name | Manufacturer | Dose | Lot | Route / Site |
|---|---|---|---|---|---|
| COVID19 | COVID19 (COVID19 (PFIZER-BIONTECH)) | PFIZER\BIONTECH | UNK | — | IM / LA |
My 3rd baby weighing 8lbs, healthy pregnancy. I had 2 previous pregnancies before any COVID VACCINES and both children are healthy (7 years and 4 years old) and myself husband and I are not carriers of the mutation that our 3rd baby was diagnosed with and believe the COVID Vaccines.boosters caused this. Child was diagnosed with Beta-Propeller Protein-Associated Neurodegeneration (BPAN), an ultra-rare, progressive, and incurable genetic neurological disease. Symptoms and Limitations: BPAN causes severe global developmental delay, low muscle tone, poor motor control, and epilepsy. Child cannot crawl, sit unassisted, stand, walk, or feed herself. She has daily startle-triggered seizures and seizure clusters despite being on three anti-seizure medications. She has limited or absent speech, significant learning and cognitive delays, and requires constant supervision for safety. Behavioral/Emotional Impact: She experiences frustration, distress, difficulty self-soothing, sensitivity to stimulation, and dependence on caregivers for emotional regulation due to inability to communicate. Disease Course: BPAN is degenerative. Symptoms worsen over time and may include loss of skills, increasing movement disorder, rigidity, and severe intellectual disability. Prognosis: There is no cure. Treatment is supportive only. child requires full-time care and assistance with all daily living activities.
no
no
Pre-natal vitamins
no
Overnight EEG (Electroencephalogram) ? multiple studies Purpose: Evaluate seizure activity and abnormal brain electrical activity Dates: _Initial 5-15-24 and various after at facilities__________________________ Extended / Video EEG Monitoring (Inpatient) Purpose: Capture seizure clusters and startle-triggered seizures Dates: _May 2024 __________________________ Brain MRI Purpose: Evaluate brain structure and rule out structural abnormalities Dates: _5-15-24 __________________________ Lumbar Puncture (Spinal Tap / CSF Analysis) Purpose: Evaluate for metabolic, infectious, or neurological causes Dates: __5-15-24 _________________________ Genetic Testing (Whole Exome / Targeted Gene Panel) Result: Pathogenic de novo mutation in WDR45, confirming BPAN Dates: __5-14-24 _________________________ Echocardiogram Purpose: Cardiac monitoring related to seizure medication safety Dates: ___Fall 2025________________________ Bloodwork (Routine & Medication Monitoring) Purpose: Monitor medication levels, liver function, metabolic markers Dates: _Since she was first diagnosed in 2024__________________________ Neurological Examinations (Pediatric Neurology) Purpose: Ongoing assessment of seizures, tone, development, progression Dates: Ongoing since __2024_________________ Developmental Assessments Purpose: Evaluate gross motor, fine motor, speech, and cognitive delays Dates: Ongoing since __2024_________________ Therapy Evaluations (PT / OT / Speech) Purpose: Assess functional limitations and therapy needs Dates: Ongoing since __2024_________________