Shirley Titus Medical Needs
Donation protected
Baby Shirley was rushed to the Hospital in February due to a 30-minute long tonic seizure that came out of nowhere. Over several days in the hospital, nothing could be found wrong aside from RSV(a respiratory virus). They chalked the event up to that and sent them home.
Fast forward to April 1st. Faith and Nathan were woken in the middle of the night to Shirley having another prolonged seizure. They thought to record the video this time and call their pediatrician immediately. She came out of the seizure and nursed and went back to bed, only to wake a few hours later with an even more severe 30 min tonic seizure. The local neurologist sent them back to Hershey for more testing. Once again everything came back fine. A week later, another 30-minute seizure and now smaller second long events were also starting. Back at Hershey to start what would be her first anti-epileptic drug. After being sent home, the smaller seizures began coming with more fervency, and the larger ones got closer an closer together. Faith left with Shirley for CHOP the day they returned from Hershey for a second option. Still no answers. Then a week later, with more 30 minutes seizures happening every other day, and little ones coming more frequently, they tried DuPont in Delaware. There the doctor informed Faith and Nathan that she was having seizures all over her brain and it was likely a genetic case. We switched mediations immediately, and the seizures stopped altogether for about a week.
Through all of this Faith and Nathan were noticing Shirley was not holding her head up independently or progressing normally. She was hypotonic and very physically delayed. They were realizing that there was more going on than just the seizures.
Fast forward to July, Shirley is having upwards of a hundred focal seizures a day, but has kept her large 30-minute seizures at bay. Shirley at this point is being followed by Dr. Vincent Carson at the clinic for Special Children. He called Faith and Nate to inform them of the results of the genetic testing.
SCN8A. A variant of unknown certainty. There are only 300 cases of this reported WORLDWIDE. It is incredibly rare, but causes intractable epilepsy(hard to control), movement disorders, global delays, sleep disorders, heart issues, most children never speak, only about 50% learn to sit up and walk unassisted. 12% of children diagnosed with this have died. It was a blow like any other.
Shirley is a special gal. Faith and Nathan do not have traditional insurance, and there are costs for Shirley that fall outside of that anyway. She will need adaptive gear like a wheelchair soon, a new car seat that can support her properly due to her low muscle tone, medications that cost $600 every 2 weeks, overnight care so Faith and Nathan can sleep, the need to invest in a minivan to make transporting Shirley easier, even planning to move to a single-story home for once Shirley is in a wheelchair. They are working as hard as they can to get Shirley stable, but she continues to have anywhere from 30-200 multifocal seizures in a day, which further delays her development. They live in a state of constant stress and anxiety.
Even if you can't donate, please pray for them to have strength and courage and for Shirley to have relief and medications to work at controlling her seizures.
You can find more on SCN8A at https://www.thecutesyndrome.com
Fast forward to April 1st. Faith and Nathan were woken in the middle of the night to Shirley having another prolonged seizure. They thought to record the video this time and call their pediatrician immediately. She came out of the seizure and nursed and went back to bed, only to wake a few hours later with an even more severe 30 min tonic seizure. The local neurologist sent them back to Hershey for more testing. Once again everything came back fine. A week later, another 30-minute seizure and now smaller second long events were also starting. Back at Hershey to start what would be her first anti-epileptic drug. After being sent home, the smaller seizures began coming with more fervency, and the larger ones got closer an closer together. Faith left with Shirley for CHOP the day they returned from Hershey for a second option. Still no answers. Then a week later, with more 30 minutes seizures happening every other day, and little ones coming more frequently, they tried DuPont in Delaware. There the doctor informed Faith and Nathan that she was having seizures all over her brain and it was likely a genetic case. We switched mediations immediately, and the seizures stopped altogether for about a week.
Through all of this Faith and Nathan were noticing Shirley was not holding her head up independently or progressing normally. She was hypotonic and very physically delayed. They were realizing that there was more going on than just the seizures.
Fast forward to July, Shirley is having upwards of a hundred focal seizures a day, but has kept her large 30-minute seizures at bay. Shirley at this point is being followed by Dr. Vincent Carson at the clinic for Special Children. He called Faith and Nate to inform them of the results of the genetic testing.
SCN8A. A variant of unknown certainty. There are only 300 cases of this reported WORLDWIDE. It is incredibly rare, but causes intractable epilepsy(hard to control), movement disorders, global delays, sleep disorders, heart issues, most children never speak, only about 50% learn to sit up and walk unassisted. 12% of children diagnosed with this have died. It was a blow like any other.
Shirley is a special gal. Faith and Nathan do not have traditional insurance, and there are costs for Shirley that fall outside of that anyway. She will need adaptive gear like a wheelchair soon, a new car seat that can support her properly due to her low muscle tone, medications that cost $600 every 2 weeks, overnight care so Faith and Nathan can sleep, the need to invest in a minivan to make transporting Shirley easier, even planning to move to a single-story home for once Shirley is in a wheelchair. They are working as hard as they can to get Shirley stable, but she continues to have anywhere from 30-200 multifocal seizures in a day, which further delays her development. They live in a state of constant stress and anxiety.
Even if you can't donate, please pray for them to have strength and courage and for Shirley to have relief and medications to work at controlling her seizures.
You can find more on SCN8A at https://www.thecutesyndrome.com
Co-organisers (2)
Ralph Cochran
Organiser
Ephrata, PA
Nathaniel Titus
Co-organiser