Boozhoo! I am the mother of Ahrie Jo who was born with a brain injury that led to a Cerebral Palsy and Epilepsy diagnosis at the age of 6 months. At 16 months, we learned that Ahrie was having “focal” seizures and infantile spasms. In February of this year, Ahrie was put on a medical trial, which was a medication called Vigabitrin. After 60 days, we did a sleep study and learned that the trial stopped her infantile spasms; however, the focal seizures were still present. In April, we started a high-dose steroid called Prednisolone, which was only for 30 days. After the first few weeks, we went back, and the good news was she wasn’t having as many episodes as first indicated, but it did not take the focal seizures away.

Since both medical trials failed, her neurologist talked with me and stated the next step for Ahrie is having the affected area of the brain removed. I quite honestly have no clue what that’s going to look like for myself and my baby.

September 15th-18th, we will be down in Milwaukee for some pre-operative appointments that will include a 48-hour sleep study, a sedated MRI, and neurological and psychological testing. If Ahrie does not get this surgery, it will only cause more damage to her brain and development. I do not know what the recovery time will be for Ahrie at this moment, but I am positive I will find out when we are down there next week.

As a single mom of 3, I do not know what this will look like if I have to quit my job to care for Ahrie during these times, as well as my older two who are both in elementary school.

Everything donated will go towards Ahrie’s medical head brace, travel expenses, and any car maintenance to get Ahrie to and from these appointments.

All prayers, love, and thoughts are appreciated.

Miigwetch!