Have you ever caught yourself thinking, “I need to share this with more people…”—just as someone is telling you a remarkable story?
One of the best things about being part of the mom.life community is getting inspired by all the incredible women who share their stories to help others.
I am particularly inspired by the strength of women who have overcome obstacles. One strong woman I admire is Jennifer Leone, one of the original members of my mom network.
I met Jen at my first job out of college in Chicago and we became fast friends. Later, Jen got married, had a daughter named Ingrid and moved to the west coast. I remember from a young age Ingrid was a sparkly soul with a tight connection to her mom. So I was devastated to learn that when she was only eleven, Ingrid had been diagnosed with a devastating illness called juvenile dermatomyositis.
In this interview, Jen shares with me how the incredibly rare and life-threatening illness impacted her and Ingrid over their decade-long battle with it. She also reveals (spoiler alert) how they eventually fought some enormous odds to conquer the situation.
Jen’s story is full of lessons for other parents helping their children through serious and chronic illnesses.
“The thing that saves us from living in fear is knowing our capacity to endure.”
Dee Anna McPherson: What is JDM and how does it affect the lives of those who have it?
Jen: Juvenile dermatomyositis (also known as JDM or JM) is an extremely rare, life-threatening autoimmune disease. It attacks small blood vessels throughout the body, resulting in skin issues, rashes, muscle weakness, heart and lung problems.
From my personal perspective, JDM is a heinous beast who breaks into the lives of children, in what feels like a violent attack, and rips away so much of the sweetness we all dream of for our kids.
“JDM is a heinous beast who breaks into the lives of children … and rips away so much of the sweetness we all dream of for our kids.”
At 10 years old, JDM crept into my daughter’s vibrant body and slowly began to take over her health.
DM: How did her disease affect her ability to make friends and do ‘normal’ childhood things?
Jen: Having JDM (for Ingrid) means zero sun exposure. Not just during active disease, but for life. Imagine your child being fine one day, playing outside for hours, and the next day, he or she can’t walk. This is what happens with some children. JDM can hit like a tsunami due to a sunburn.
Before JDM hit, Ingrid was a beach bum. All her favorite things included being outdoors. The sun was her friend. And then—just like that—it became her enemy. I don’t have words to express how much this affects her to her core. She’s missed out on many summer adventures and days on the beach with friends. She missed numerous school days due to being too sick, or having a compromised immune system from the medical treatments she underwent. The fact that she had to change a big part of who she is to accommodate her health was, and still is immensely painful. It feels like continued limitation and loss.
Ultimately, Ingrid experienced JDM with a mix of acceptance, denial and rebellion. In later years, she was hellbent on being a “normal” teen. She was doing all the things many teens do, but she went against her own health in order to feel normal. She spent a few days in the sun, as well as did some drinking and smoking, (all extremely dangerous to the liver during JDM treatment). She went through two flares (spike in illness) because of her choices before her immune system was back in check. She eventually learned that taking chances to feel “normal” for a day two, wasn’t worth risking her life. She learned to embrace indoor activities, including horseback riding (in a shaded arena) and ballet, which in large part are exactly the things that now fuel her writing, actingand art. All of it has played a significant role in who she is as an artist today.
DM: How did you feel when you first discovered that your daughter Ingrid had JDM? How did you tell her?
Jen: The first symptom appeared in the spring of 2006 when she began experiencing a photosensitive rash on her cheeks, out of nowhere. She would feel discomfort, or itching when exposed to the sun, even if just for a few minutes. The facial sensitivity and rash continued throughout the summer, but came and went so it was confusing. I took her to various doctors and received different explanations and diagnoses of non-serious conditions, including eczema. Eventually, in the fall, I noticed redness around one of Ingrid’s cuticles that wasn’t healing. Over the next couple months, every cuticle became red, and eventually every knuckle was showing tiny red bumps. I took Ingrid back to her pediatrician and upon examining Ingrid, it was obvious that her doctor was seriously concerned. She told me that extensive testing and further examination was in order, but she was 99 percent sure it was JDM. (Tests later confirmed this.) I felt numb. All I could think was, what’s next? Will JDM kill Ingrid?
“The day Ingrid was diagnosed was one of the most surreal days of my life. I felt as if we were transitioning into a dark, alternate universe, and life would never be the same.”
Telling Ingrid she had to be tested for an incurable disease feels blurry to me now. I explained to her that her body might be experiencing something called dermatomyositis, which is an autoimmune illness. She responded, “Dermatomyo-WHAT?! And what is an autoimmune illness?” I did my best to explain it all in ways she could understand in her ten year old brain. I told her there would be numerous hospital visits and doctors examining her. I explained that I didn’t have all the answers, but assured her I would do everything I could for her health. I told her I would be with her every single minute, for every test, for everything she was about to go through. The day Ingrid was diagnosed was one of the most surreal days of my life. I felt as if we were transitioning into a dark, alternate universe, and life would never be the same.
DM: How did you get through the darkest days when the situation was touch and go?
Jen: As Ingrid progressed deeper into illness, her appearance began to change. She didn’t look well. She began feeling completely rotten. The entire first two years after the diagnosis and into Ingrid’s treatment felt extremely dark. I continued researching JDM, as well as searching (like a woman gone mad) for a doctor who understood what JDM is, all while I watched Ingrid’s health decline.
Two years after the initial diagnosis, Ingrid had what is called a “flare” of the disease. She would end up having several over the next eight years. This is when a patient is on treatment and the disease seems to have calmed down, but suddenly, it comes back.
I couldn’t find any light. I felt as if we were both being emotionally and physically tortured. I felt extremely drained from the demands of managing a chronic illness and being a caregiver. Eventually, after a lot of emotional work and extensive reading from authors including Eckhart Tolle to Mark Matousek, I began to live in each moment. I also began to learn how to accept what was happening. I still work at these practices today. Some days, I decided to live hour by hour, even living minute by minute became a way to cope with what was in front of us.
Eventually, I came across the Cure JM Foundation online and it changed our lives.
Through the foundation, I was connected with another local parent and child in the same situation, and received information on the top doctors in the world for JDM treatment. We were able to immediately understand one another. She and her daughter and Ingrid and I have all forged a soul connection and are sisters for life. Through the Cure JM Foundation, we are now connected with hundreds of families in the same situation. We share everything from emotions to treatment protocols, which is vital when dealing with such a rare illness.
Another thing that saved me from totally losing it was creating a product that solved a problem for my daughter, and lifted massive amounts of worry for me. I invented a product, inspired by Ingrid and her need to have numerous medications and hydration at her fingertips at all times. She was forgetting to take life saving medications that simply couldn’t be skipped without severe, negative, and dangerous effects. Because the Pillid (www.thepillid.com) made every day so much easier for us, I decided to move forward with manufacturing, and brought it to market. This work gave me a focus and hope during an otherwise extremely dark time. While the Pillid is just a little piece of plastic, it is literally a life saver. This feels amazing when you’re in the throws of feeling like everything is falling apart and you’re yearning for solutions. One simple daily solution during life-threatening illness feels like enormous progress. I never imaged I would invent anything, and become an entrepreneur. I love the work and hope the Pillid will help simplify the lives of countless others, as well as support research for a cure.
I would not be doing this work without the backing of my business partner, who is also a close friend. She has made it all possible by backing me and Ingrid on every level. She has literally sustained us. She, and several other dear friends invested in the company, and continue to believe in the Pillid. This feels beyond humbling.
DM: Now, I know that today Ingrid is doing very well. She’s 21 and going to art school. You somehow managed to defy huge odds, to overcome JDM. How did that unfold?
Jen: My friend gave me a referral for the rheumatologist who would eventually become the woman who saved Ingrid’s life. The day we met ‘Dr. P,’ our lives were forever changed. Her team spent hours with us and when she had gathered all the information she needed, she came in, sat down and looked at me directly in the eyes and said, “I can help your daughter.” Then she allowed me to ask all of the questions I had written down… four pages worth. She answered every single question.
I had no idea how heavy things had become until I heard her voice and words comfort me… I had forgotten what lightness felt like. I had no idea how it would feel to have what felt like several tons lifted off my back. Suddenly, I could see some light. I could take a deep breath. The doctor was smiling! We were smiling and tears flowed, but they felt different. They came from a place of relief.
Dr. P would lead the collaboration for treatments with SCH (Seattle Children’s Hospital). We would fly to Chicago every three months for the first year, and as things became more stable, we would go every four months, then every six. In addition to the medical treatments, we learned a whole new perspective that helped. “Fighting” and “battling” are not words we use in regard to JDM. Resisting it was exhausting, so we accepted it and focused on transcending it.
DM: Wow, okay that’s interesting. Tell me more.
Jen: There is magic in letting go and floating downstream, instead of swimming against the current and banging up against rocks. We felt empowered in trusting the treatments and most importantly, Ingrid’s body. We still had plenty of negative thoughts. But when we stopped resisting, it gave us energy to endure. When we were fighting, we lost energy.
“There is magic in letting go… When we stopped resisting, it gave us energy to endure.”
We decided to accept it all; the treatment, and even bigger, we began to visualize and think of the toxic medicines as superheroes coming to the rescue. We changed our perception and welcomed the life-saving concoctions. It didn’t help to focus on the fact that it was poison. It helped to focus on how it could save Ingrid’s life. It was the only way we could allow it into her body and feel ok about the treatment.
DM: What advice do you have for other parents helping their children through serious and chronic illnesses?
Jen: Find others in the same situation. This could be via online services and groups. For us, in 2007, it was finding the Cure JM Foundation. Knowing you’re not alone works wonders.
Beyond this, gain access to information about the best doctors and treatment options. Build friendships with people who truly understand what you’re going through. It can be a lifeline on several levels.
Self care for a parent is also imperative. I went through years in which I didn’t take care of myself because I was too focused on my daughter’s health and I was exhausted from taking care of her. I learned that self care is necessary in order to sustain my own health and life and to continue being truly present for Ingrid. For some, self care is a daily walk, a yoga class, or a support group. It could be a funny, or thrilling TV series to get lost in during free time—something to stop the mind from spinning into the depths of worry. I recorded The Ellen Degeneres Show and when I had time, I watched it before going to sleep. The humor helped me relax.
Another recommendation is to apply with the Make-A-Wish Foundation. If your child has a life-threatening disease, they will be considered for a wish. We did this when Ingrid was 16. The Make-A-Wish experience ignited a spark in Ingrid. It was life changing and we hope to give back to the foundation to support many wishes for kids living with illness.
DM: How is Ingrid doing today?
Jen: Ingrid is doing really well! Overall, she is living a normal young adult life, with the exception of steering clear of the sun. She has been off of treatment for over two years and is holding strong. She was recently accepted into art school, which is such a thrill! I am so proud of how hard she’s worked even when she isn’t feeling up to it, she keeps on going.
On an emotional level, JDM has changed who we are. It’s impossible to go through it and come out the other side the exact same person you once were. You learn so much about what true compassion and empathy are. Ingrid is one of the most compassionate people on the face of the planet. She can empathize with most human beings and has the capacity to put herself in other people’s shoes.
I would be remiss if I didn’t share that there is also an underlying fear when a cure is still out of reach. There is an awareness that it could all happen again.
“The thing that saves us from living in fear is knowing our capacity to endure.”
Has your family been through something similar? Share your story in the comments and with other moms in the mom.life app where you can find support, make friends and more.