Tori's Story: A Long Path to Medically Complex Diagnoses

By Tori Greene

My name is Tori Greene. I live in Virginia, where we relocated when we had to leave the South to access better health care, with my husband Duncan and two children, Bentley and Aubree, along with my mom. She’s 66 and has lived with us supporting the family since my children were born. We also have Chandler the cat, a stray whom we think is about 11 years old.

Bentley is 15 and he loves racing. He’s extremely good at Gran Turismo, a racing simulator; he has grown men asking him for advice and he’s one of the top-ranked players in the world. Like me, he also loves New York. He’s so happy to be there every time we go. And he’s an absolute math wizard: He can run the numbers in his head, not like Aubree and me!

Aubree is 11 and she loves horses. I think she knows everything about them, even though she cannot ride right now due to her medical conditions. She’s also extremely artsy and creative; she makes these fantastic dragon puppets out of cardboard!

We live a pretty sheltered life. If the choice is between staying home and going out, we’re staying home. We like to chill out and relax; Duncan plays a lot of video games. When I am able, I participate in game shows. I really love it, even when sometimes it feels like everything I know has left my brain! (Don’t ask me about the time I answered “October Madness.”)

We’re a really unusual family, because we all have rare diseases, but we all have different ones; we rolled the dice and really lost, we have the whole alphabet soup. I have postural orthostatic hypotension (POTS), cystic fibrosis, Ehlers-Danlos, Addison’s disease, pelvic congestion syndrome, endometriosis, tethered cord syndrome, and a chiari malformation, which affects my cerebellum and spinal cord. I am taking a lot of medications and am in and out of the doctor’s office a lot. All of this is very fatiguing. Sometimes I have a totally active day and then I’m laid flat for the next three days. It’s not like I’m a little tired and sleepy: My whole body is dragged down. It’s overwhelming. I use a wheelchair part time because of this. Despite that, I’ve been denied disability three times; the last time I was literally showing up to the hearing with an IV pole, getting fluids and vitamins, and they still turned me down.

I feel bad sometimes because as a mom, I’m supposed to be able to take care of my kids, to go out with them, to take them to the grocery store, and I just can’t. I can’t drive because of my medical conditions, and it’s so hard to get all of us out of the house. We have three wheelchairs, and varying energy levels, and it’s just a lot. I try to push myself to give them a “normal” childhood, and they don’t have kids who relate to them. I know it’s irrational, that I shouldn’t feel this way, but it’s so hard. My extended family judges me, and I feel people judging me when I’m out at the store, or an event.

I was 17 when I had Bentley; Duncan and I met, moved in together, married, and had a baby all in a year, a real testimony to dating apps! I noticed pretty soon that he wasn’t talking as early as I expected and when he first took off walking, it was on his tiptoes. He fell a lot. When he was 18 months old, he just…stopped. He started regressing, and his doctor said it looked like he had autism. He does have autism, but the walk isn’t about a sensory issue, it’s mechanical. He just couldn’t go flat because he had such low muscle tone.

At the time, we were deep in the South, where the healthcare is crap. When he started having trouble with his eyes, the doctor kept telling us it’s an infection, no big deal. He was falling at school every day and people told us he was just being dramatic or trying to get out of class. His eyes turned bloodshot and the hospital told us it was just a broken blood vessel. I finally found a pediatric ophthalmologist and she said “something is really wrong.” His optic pressure was sky high, and we found out that his vitamin A was less than 2.5, and his B12 was, like, 40. Those are not numbers you want to see.

We ended up at a neurologist’s office where they did a nerve conduction study and Bentley just didn’t feel it. The doctor said he was faking it, and I took us several hours to Florida, where another doctor did a study while he was under anesthesia and we found out that the nerves in his legs weren’t working and he was starting to lose sensation in his arms, too. We packed up and moved to Virginia, and within three months, we had a diagnosis. Bentley wasn’t faking it, and I wasn’t pushing my own diagnosis on him. He has Charcot-Marie-Tooth syndrome, autonomic neuropathy and MCAS. He could have died. Now he’s in a study at the National Institutes of Health to learn more about his condition and help people with neuromuscular disorders.

When Aubree was born, I noticed immediately that she had a little pug nose, like there was just no cartilage there. I took her to so many doctors and they all said it was normal, she was fine. Then she started puberty at seven, and it was clear something was wrong. Right when Bentley started getting really sick, she started falling all the time; it turns out she has POTS, like me. Her teachers were telling us that she was lying about it. I had to pull her out of school and homeschool her, because they were doing things like forcing her to do physical education in 105 degree heat and she was just collapsing. Like Bentley, once she started seeing doctors here, she got a diagnosis: POTS, and she also has a rare condition called Stickler Syndrome. It’s a severe cartilage disorder, which is why her nose is like that, and she has a chiari malformation too. Like Bentley, she’s also participating in a clinical trial to learn more about her conditions.

Bentley is on Medicaid, which pays for the supplies he needs. We would never have been able to afford his wheelchair and walker. As we get settled in here, I also need to apply for Aubree, because she needs that kind of coverage too. Our whole family needs help with the costs of doctors’ appointments, therapies, an aide to help me care for the kids and get around. I don’t know what we would do without it. The thought of cuts terrifies me.

I am really passionate about families like mine. I feel like we don’t see a lot of chronically ill parents with disabled kids, and I want people to feel like they’re not alone; I started a TikTok and Instagram to share about our life, and it resonated with so many people. Some people are scared and embarrassed to speak up, and I want people to know that they shouldn’t feel shame, that they aren’t bad parents.

Someday, I would like to get a little apartment or studio in Washington, DC, where people could stay while they need medical care. Sometimes you need to be in and out of specialty clinics for a week, and you’re so far from home, you might be spending hundreds of dollars on travel and a thousand or more for a hotel. There are programs that help with this, but families need so much more.

Just because you’re sick doesn’t mean you can’t live your dreams. I want people to know that, to know that there’s help out there for them, that programs like Medicaid are here for us to save lives and help us live independently in our communities.