Carter Davis - Tuberous Sclerosis Complex type 2
Donation protected
When Hayden was 28 weeks pregnant, the OBGYN discovered the baby had a tumor on his heart. She was referred to a Matrimal fetus medicine doctor who in turn referred her to Barnes Jewish Hospital in St. Louis for evaluation. It was decided that she would deliver the baby at Barnes Jewish and they would immediately do tests on the baby to determine what needed to be done. This was done at Children’s Hospital in St Louis. Carter was born August 30, 2017. After testing, he was diagnosed with Tuberous Sclerosis Complex type 2. He had 3 tumors on his heart, one the size of his left ventricul. He now only has the 1 large one and 1 medium size on the heart and several in and around his brain. Carter has multiple seizures daily and they are getting stronger and more severe. He had one last October where he stopped breathing and EMT’s were able to revive him and get him to the emergency room. He has been transported twice from Springfield, Mo to St Louis by ambulance, 210 miles away.
For a while the seizures were affecting the left side of his body where his left arm and leg go limp and he has no control of them. Lately, he will fall wherever he is and the left side goes limp and the right side will twitch. Seems like every time he gets a fever, he will have a seizure. He has had up to 9-10 seizures day. When not having a seizure, he’s a perfectly normal, happy little boy.
Hayden is a single mother trying to take care of Carter. This week she got fired from her job for calling in so many times when Carter is sick or having to leave to take care of him with a seizure. She is starting a new job soon working at night so she will be home with him during the day. She is also trying to do online classes to get her degree to teach Special Ed.
Hayden had Carter covered with Medicaid until mid October (about 6 months ago) when he was dropped because they didn’t receive a form. Since then she has been trying to get it reinstated. Carter hasn’t had any seizure meds since the end of October. When Hayden went to get the meds refilled, she was told Medicaid had been canceled. The seizure meds cost about $2000.00 per month and a single mother on limited income doesn’t have the money to pay for it. She has reapplied 3 times for Medicaid but keeps getting the run around. Due to lack of insurance, his pediatrician and cardiologist won’t see him and TS specialist in St Louis saw him in January but holding off further testing until he has insurance. There’s some new drugs the TS doctor wants to put him on but this can’t be done until they have insurance. Mother and baby desperately need some help with medical expenses.
For a while the seizures were affecting the left side of his body where his left arm and leg go limp and he has no control of them. Lately, he will fall wherever he is and the left side goes limp and the right side will twitch. Seems like every time he gets a fever, he will have a seizure. He has had up to 9-10 seizures day. When not having a seizure, he’s a perfectly normal, happy little boy.
Hayden is a single mother trying to take care of Carter. This week she got fired from her job for calling in so many times when Carter is sick or having to leave to take care of him with a seizure. She is starting a new job soon working at night so she will be home with him during the day. She is also trying to do online classes to get her degree to teach Special Ed.
Hayden had Carter covered with Medicaid until mid October (about 6 months ago) when he was dropped because they didn’t receive a form. Since then she has been trying to get it reinstated. Carter hasn’t had any seizure meds since the end of October. When Hayden went to get the meds refilled, she was told Medicaid had been canceled. The seizure meds cost about $2000.00 per month and a single mother on limited income doesn’t have the money to pay for it. She has reapplied 3 times for Medicaid but keeps getting the run around. Due to lack of insurance, his pediatrician and cardiologist won’t see him and TS specialist in St Louis saw him in January but holding off further testing until he has insurance. There’s some new drugs the TS doctor wants to put him on but this can’t be done until they have insurance. Mother and baby desperately need some help with medical expenses.
Organizer
Betty E. McCullah
Organizer
Springfield, MO