Despite a perfect pregnancy, the delivery of Fox was anything but. During labor, Fox was under fetal distress due to a prolapsed cord. Instead of doing an emergency c-section, the doctor decided to proceed with forceps, which caused Fox to suffer a stroke from being deprived of oxygen for too long. This was unbeknownst to everyone, including us and was only discovered after he presented with status epilepticus on his 3rd day of life. We were able to get seizures under control within 24 hours, but an MRI discovered that he had brain damage to his temporal and occipital lobes. This has caused some developmental issues as well as Cortical Visual Impairment.
We went home and started early intervention right away and Fox was responding wonderfully, but around 4 months of age, he started performing an odd leg-jerk movement. The new movements began to progress into whole body jerking in several clusters a day. Fast forward 5 weeks and a hospital stay later, we received our Infantile Spasms diagnosis.
Infantile spasms is described as one of the “catastrophic childhood epilepsies” because of the difficulty in controlling seizures and the association with mental retardation. This type of epilepsy can actually cause brain damage due to its severity and long chaotic patterns. Unfortunately, for the past 3 months, we have tried every single front-line med that exists for IS and failed, multiple times in some particular cases. His spasms have decreased by 40-50%, but we have yet to find a "cure" for this terrible condition.
Since birth, we have racked up thousands upon thousands of medical bills (despite having decent insurance provided by Trey's public education previser) from the 2-week NICU stay, weekly out-patient visits, expensive medicines, routine and overnight EEGs, xrays, hospital visits to start the ketogenic diet, etc.
These funds would not only go toward medical bills, but also toward tools for therapies that Fox gets 3 times a week. Every donation will go a long way in bridging the gap from debilitating condition to a sense of security and normalcy for Fox, and we appreciate every single penny, because it's a demonstration of your kindness and care for our little baby boy. Thank you for takingthe time to consider donating and easing our family's great financial and emotional burden.
- Kimmi Marković
- Ryan Ours
- Rebekah Culbert
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