Danny's Story: An Animal-Loving Eighth Grader

By Laura Robeson

My name is Laura Robeson. I live in Kansas with my husband Dan and 13-year-old son, Danny. We also have a cat, Woody, named after Woody Guthrie.

Danny is such a joyful kid. He’s so fun and interesting. He is somebody that always looks for the good in situations and also finds humor in things that other people would find frustrating. Any time something bad happens, he brings a lot of light. He’s also a real instigator. Danny loves music and podcasts, but unlike a lot of kids, he also likes to watch and listen to board or county commission meetings. These people are like celebrities to him, and listening to their meetings are a real treat for him. 

He just started eighth grade and the life sciences are his favorite subject. He absolutely loves learning about animals and was even able to go to the Memphis Zoo when he was little to visit the pandas and feed them. It was a really big deal for him to meet the zookeepers and see behind the scenes like that. Animals are high on the list for Halloween costumes, birthday parties, the whole thing. He also really enjoys the Percy Jackson books, which are a great introduction to mythology and so fun to read with him. 

Danny was born at 30 weeks and spent the first six weeks of his life in the NICU. He had a lot of medical intervention and support and when he got home, it was apparent that there were some developmental things going on. It took us a year of testing to find out that he had cerebral palsy and a few months after that we saw that he just couldn’t keep up with nutrition, so we had a G-tube placed. At three, he was diagnosed with epilepsy. 

Danny has had multiple orthopedic surgeries and requires braces to support his posture. To help with his seizures, which are really difficult to control, he has a device called a vagus nerve stimulator and he also needs to be on a total ketogenic diet, which we have to blenderize at home. Everything he eats or drinks goes through his G-tube. And because of his cerebral palsy, any infection can be really dangerous, especially with anything involving his lungs. Common viruses and illnesses can turn serious very quickly. He is nonspeaking and because of the movement issues caused his cerebral palsy, it’s hard for him to use a communication device, so we’re constantly experimenting with that as well. 

As you can imagine, Danny sees a lot of specialists. His care team includes neurology, epileptology, gastroenterology, nephrology, endocrinology, ophthalmology, orthopedics, and physical therapy. Aquatic therapy in particular has been really beneficial for him and he really enjoys the pool. He also works with a 1:1 paraprofessional at school who helps him keep up with his classes. He’s entirely in general education classes and his school has been so supportive with making sure that he gets a great educational experience. At home, we get support from a care worker who actually used to be his paraprofessional, he’s been great with helping Danny with range of motion exercises at home and supporting him while I’m working from home. 

Danny also needs a lot of equipment, including a wheelchair, stander, cough assist, and suction machine. He’s eligible for the technology assisted waiver here in Kansas, which is a Medicaid waiver for kids like him who are technology-dependent and would be living in an institution without this support. Medicaid pays for everything our primary insurance doesn’t cover. Medicaid saved Danny’s life and has been so important for our family. The services Danny gets at school allow him to learn and socialize with other kids and get critical physical, occupational, and speech therapy at school that set him up for success. I’m very worried about what will happen when we lose federal funding. We’re already seeing the state tightening eligibility standards and making it harder to get Medicaid. I know that the “optional” services Danny gets so he can live in the community are on the chopping block. This includes the services Danny gets at school that allow him to get the education he deserves and is legally entitled to. 

People will tell me that these cuts won’t affect kids with “real” disabilities like Danny, but they absolutely will. Cutting funding for the services he receives will hurt him and kids like him. It could force him into an institutional setting because he would be unable to be safe at home, where he is so loved. They’re absolutely talking about these programs that are so important for kids like Danny when they talk about cutting Medicaid, and these cuts will hurt anyone who needs medical care when we start seeing hospitals close or cut back services and providers are forced to close or limit their services as they lose Medicaid reimbursements.