Cole's Story: An Empathetic, Curious Lover of Animals and Nature

By Victoria Schiano

My name is Victoria Schiano. I live in Pennsylvania with my nine-year-old son, Cole. I’m proud to work with Little Lobbyists as their Community Engagement Coordinator, which gives me an opportunity to interact with state chapter leads and their families all over the United States.

My son Cole is adventurous and very outgoing; he loves being outdoors, and is a huge fan of state parks (we’ve visited almost every state park in the region!). Cole is also incredibly curious. His passion is science and technology and he loves every animal from ants to elephants, although he’d be the first to tell you that he thinks ants are cooler. He’s also very empathetic and kind. At school, they call him the mayor because he’s befriended all the staff, from the school nurse to the janitor.

Cole has such an open heart, wants to be everyone’s friend, and wants to take care of everyone. His empathy is constantly on display.

Before I had Cole, I experienced seven miscarriages. He was such a wanted child, and I had a pretty smooth pregnancy, although he did decide to show up four weeks early.  Everyone at the hospital said he was healthy, although he did have jaundice, which isn’t uncommon in newborns. Once he came home, though, I could tell that something was wrong. He wanted to sleep all the time and didn’t want to eat. When he did, he screamed. It seemed like he was inconsolable.

By six days old, he was in the hospital for the first time, getting a feeding tube while the doctors tried to figure out why he was failing to thrive. He spent most of his first two years in the hospital, although sometimes he would come home for a week or two. Ultimately, they put in a central line so he could receive total parenteral nutrition (TPN) intravenously and directly through his heart. This is how he gets his nutrition and fluids today, although he does sometimes eat by mouth and really enjoys chicken nuggets and fries.

We started going to specialist after specialist and doing a lot of genetic testing, but we couldn’t figure out what was wrong. At age one and a half, he was still wearing clothes sized for a three-month-old baby; he repeatedly ended up in the hospital in critical condition and was lifeflighted several times. Finally, his pediatrician suggested he might have mitochondrial disease, and recommended that we go to a new clinic that had just opened at the Children’s Hospital of Philadelphia, where he met Dr. Goldstein, who saved his life.

A day before his second birthday, testing confirmed that he had mitochondrial disease; today he has 36 doctors and is constantly in and out of medical appointments. There’s not much you can do to manage mitochondrial disease, and like many kids with this condition, he has numerous other health issues, which sometimes crop up suddenly. For example, he went from having healthy lungs one day to struggling to breathe the next, and had to be on oxygen for a year while being tested to figure out why this was happening. We’re just constantly responding to the next thing.

Cole needs 24/7 attention because of his central line, and is eligible for 20 hours a day of skilled nursing: We need that level of care, not an aide or CNA, because of his condition. Nursing care allows me to sleep and lead my life, focusing on loving Cole and enjoying life with him. It also allows Cole to go to school. He missed nearly five months of kindergarten due to shortages in nursing care! Some of his nurses have been with us for six years. We’re very connected to each other.

When Cole was around three months old, a social worker reached out to me. She said that given his medical complexity and the amount of time he was spending in the hospital, he would be eligible for Pennsylvania’s PH95, the Medicaid waiver program that allows children who need hospital-level care to stay at home with their families. Without this waiver, I would not be able to afford the care he needs to live an active life in our community. He would be living in a hospital or nursing home.

Before we could get him on the program, though, he needed to be denied Social Security, a process that can take months. This was what really fired up my advocacy. We couldn’t wait six months. I reached out to Senator Casey and explained the situation, asking him for help. Within a week we had a hearing and got the “no” we needed to apply for Medicaid, and Cole has been thriving on it every since. Without Medicaid, I would be bankrupt, homeless, and separated from my child.

When I hear about Medicaid cuts, it feels like they’re threatening to kill my child, because they are. It doesn’t feel like a policy change or improvement to the program, it feels like people personally attacking my child and saying he doesn’t have a right to be alive, to be part of society. It’s terrifying and heartbreaking and maddening. I don’t understand how anyone can look at any human and say something like that.

I also look at the cumulative effect of these cuts on our communities, states, and country. There are so many people in this country with disabilities that will be affected by this. This doesn’t just affect human lives, but the economy, the arts, education, the whole health care system, because hospital closures and provider shortages affect everyone, even healthy people. I worry for our loved ones, our families, but also the nurses, doctors, physical therapists, everyone at risk of losing their jobs. We’re already seeing the impact with therapies being denied.

Take the fight I am having with my compounding pharmacy over authorizations for his lifesaving seizure medications; they’re saying that I am trying to fill them too early, and forcing me to wait, but he repeatedly runs out of this medication, and this isn’t something optional that’s okay to miss now and then.

Just yesterday I got a call from home health saying they would be cutting coverage of some of his TPN supplies: This is the only way Cole can eat, it requires manufacturing in a sterile facility by highly-trained specialists, we can’t just go to the grocery store and pick up some sandwich bread to tide him over. Meanwhile, the tariffs are increasing the price of his supplies and also causing shortages as companies cut production and shipping to the United States.

For kids like Cole, Medicaid is an essential program. They will die without Medicaid. When you cut Medicaid, when you make it harder to get Medicaid, you’re telling medically complex children like my smart, curious, loving son that they don’t have a right to exist and aren’t part of society. That’s not a society I want to live in, and that’s why I advocate every day for medically complex children, for parents who can’t because they’re working two jobs, or overwhelmed by paperwork, or just don’t know where to start. Like Cole, I am always thinking of others, and believe that we should move through the world with empathy and kindness. I want lawmakers to feel the same way.