Laonis has suffered from asthma since she was six years old. Her children, nieces, nephews, and mother also have asthma. She became a nurse to help other sick people and became a patient advocate for children with asthma after losing her first son, Tony, to a fatal asthma attack.
My story is really my son’s story. His name is Anthony. We call him Tony.
Tony was diagnosed with asthma when he was 18 months old. I knew he had it way before that. I have it, too. A lot of our family members do, but his was always much more severe.
He was sick all of the time. His medications would change often. He did spirometry [common breathing test to assess how well the lungs are working] and sleep studies, and he missed a lot of school.
I had to pay for private school because, at the time, the public schools didn’t want to be responsible for nebulizers [machines that turn medication into an inhalable mist]. Nowadays, kids are allowed to carry their rescue inhalers with them.
We had great care for a while. There was a paediatric pulmonologist [a physician specializing in respiratory conditions] who saw Tony for seven years. I would call her at 3 a.m. if Tony was having trouble breathing, and she would answer. She would call back to make sure he was OK. When she retired, I was heartbroken. But we stayed at her clinic because I didn’t think to go anywhere else.
When Tony turned 21, he was no longer eligible for my health insurance, and the clinic turned us away. I begged them to still see him and not kick us out. They knew him his entire life and understood the level of care he needed.
They directed me to a free clinic. The doctor there saw Tony once and told us that we could come to pick up medication every month, but when Tony would get sick we had to take him to the emergency room. The ER became our treatment clinic.
“I’m OK, Mommy,†Tony would try to convince me with every asthma attack. He never complained. But even though he was a grown man, he didn’t get to do grown man things. He was sick very often, and he depended on us a lot.
I tried to get him on Medicaid or on disability, but nothing worked. About a year after we started going to the free clinic, Tony passed away from an asthma attack.
Coping With the Loss of My Son
I felt like I let him down. [I thought,] "How did you let this happen? You’re a nurse. You take care of sick people every day. But this kid lives with you and you failed him." I told this to myself for so long that I wanted to kill myself.
I was so guilt-ridden about not being able to save my child. For years, I couldn’t say his name or look at pictures of him. I don’t know if you ever heal after burying your child. I don’t know if you really feel free after that.
During one of my shifts, I saw another nurse whom I worked with. I never knew her name, but we were friendly. Somehow we started talking about Tony, and she suggested that I start a foundation. I wanted to do something to honour Tony, but I had no idea how to start a foundation. So I asked for help.
Turning Pain Into Purpose
It’s been four years since I started the Breathe Anthony J. Capman Asthma Foundation. I ended up getting a master’s degree and an asthma certification so that I can teach asthma education. Now, not only am I able to talk about Tony, but I can help other mothers who have lost children or have children with asthma.
A huge part of my work is education and access. The foundation provides air purifiers, mattresses, pillow covers, [devices that connect to an inhaler's mouthpiece called] spacers, cleaning supplies, nebulizers, and more to people who can’t afford them. These tools make a huge difference for children with asthma. They save lives. I met one mom who has four boys with asthma and only one nebulizer. That should never happen.
I like talking to other mothers who have lost their babies because I know where they are. I’ve been there. I’m there now. I still sit where they sit because it’s a day-by-day process of trying to heal. I tell them that they just have to move through it.
For me, I wake up each day and think, “OK, this is how I’m going to handle Tony today.†I talk to him like he’s sitting next to me, and that’s been helpful.
Understanding the Threat of Asthma
Asthma deaths should never happen. I don’t care if you’re Black, White, blue, or green—doesn’t matter what colour you are. We know too much nowadays to lose people to asthma.
A lot of the time people think their asthma is gone, or that it’s very mild. But an asthma attack can be triggered by anything. Sometimes you don’t know something is a trigger until you can’t breathe.
My foundation does YouTube videos to help educate parents. Some examples of videos include “What Is Asthma?,†“How to Use Your Inhaler,†“How to Make Your Home Asthma-Free,†and similar topics.
Something I didn’t know was how dangerous night-time asthma is. Dust mites in sheets and pillowcases were a huge trigger for Tony, so that’s why we give away pillow protectors. We teach moms to use air purifiers, too, because your child’s bedroom needs a combination of all those things.
I can’t say it enough: Know your child’s triggers. Know what signs to look for. Asthma affects everyone differently. For some people, it’s a runny nose, coughing, or wheezing. Even a small change in their behaviour can signal that something is wrong.
I live in Detroit, and asthma is a problem there. There’s a room in the Children’s Hospital of Detroit called the "asthma room." It’s full of mothers holding their babies who are getting breathing treatments.
There’s a ZIP code, 48017, that’s highly polluted from all of the factories. It’s an asthma nightmare. The people who live there are stuck there. A lot of homes are old, mouldy, have old carpets, and sometimes cockroaches.
"It’s hard to get out of poverty, and Detroit is predominantly Black. Detroit has the 15th highest rate of asthma in the United States".
— LAONIS QUINN
Most of the specialty doctors, like asthma or allergy specialists, are not in the inner city. They are out in the suburbs. If you don’t have a car, then you don’t have access to those doctors. Or, if you’re in the rural areas and there’s no public transportation, then you’re stuck.
I’ve met mothers like that. They love their children, but they are stuck in their environments. If you don’t have a car or even air-conditioning, then you probably don’t have the $20 to buy a spacer (a tool for your inhaler that helps medication get to your lungs).
Inhalers are expensive even if you have a good salary. When I first started on my current inhaler, it was $850 for one month without my insurance. With my insurance, it’s still $173 a month. Thankfully, I have a good job, but that’s still a lot of money.
It’s hard to get out of poverty, and Detroit is predominantly Black. Detroit has the 15th highest rate of asthma in the United States. It’s eighth in asthma death rates, and it’s getting worse.
This is how disparities exist.
Moving Forward for Tony
I know this happened to Tony for a purpose. I know I’m here to help other children like Tony. The biggest takeaway from my journey with my son is to do your best. Taking care of someone with a severe illness is not easy. If you need any help, or for more information on asthma, visit Breathe Anthony J. Chapman Foundation.
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