When our daughter Tilly was 5 months old, my husband and I noticed a rash on her face and neck. She was obviously itchy and pretty cranky about it, so we took her to her pediatrician. After a long process that involved changing everything from detergents to my diet (because I was breastfeeding), as well as a trip to a dermatologist, we were referred to an allergist.
That's when we learned that Tilly had eczema, sometimes called atopic dermatitis. She also had a wide range of life-threatening food allergies. The two were connected — some of what I was eating and passing on through my breast milk was toxic to her, and it was affecting her skin.
After that, everything changed. Tilly's diagnosis required a huge shift for our entire family. We had to be super careful around her, wiping down surfaces and washing our hands constantly. I had been a vegetarian for 20 years, but I had to start eating meat because she was allergic to protein sources like eggs and dairy. Every decision we made was controlled by Tilly's condition.
We lived in a perpetual state of exhaustion. Like many people with severe eczema, Tilly didn't sleep well because of the constant itching. Our poor baby would scratch herself until she bled. When Tilly was 1, my husband and I started sleeping in shifts to try to prevent her unconscious itching. This went on for three years.
Around age 3, Tilly's eczema really started showing us it was in charge. She was hospitalized three times for severe infections from scratching, isolated in an infectious disease ward. These days we're all used to seeing doctors and nurses in full hazmat gear because of Covid-19, but tiny Tilly sure wasn't. She was terrified.
For a long time, Tilly's eczema was in a nearly constant state of severe flare. Multiple layers of skin were missing from her face, and she had trouble blinking. She couldn't bend her legs. Putting her in the shower was agonizing. You know how it feels when you have a cut and it burns in the shower? Imagine that cut is covering 97% of your body.
As hard as it was to see Tilly suffer physically from her eczema, the emotional toll was even more devastating. It's heartbreaking to watch your 5-year-old give herself a pep talk every morning before leaving the house. She would look in the mirror and say, "I can do this, I can do this, I can do this."
When it was time for Tilly to start school, I got her a 504, a type of federal protection for children with disabilities that ensured the accommodations needed to keep her safe from exposure to allergens. Because she was starting to become more aware of her appearance — and because kids have no filter — we also got her a therapist who specializes in treating kids with eczema and food allergies. She still sees that therapist, and it has really helped our whole family.
Meanwhile, we tried everything to treat Tilly's eczema. Our pharmacist knew her by name because she got so many prescriptions. They even kept special treats for her behind the counter. We tried light therapy, which Tilly called "the hot box" because of the heat from the UV light used. We participated in studies at the National Institutes of Health, which, luckily, is close to our house. We even tried alternative healing methods like having her chakras realigned. Nothing worked. We got to the point where the next step was to put Tilly on a low-dose chemotherapy drug to suppress her immune system, but even that would only provide temporary relief.
I was at the end of my rope. I never wanted Tilly to see how much work went into keeping her safe, but I was worn out. I felt like a swan, appearing serene and beautiful on the surface but paddling furiously underneath. We were out of choices, and I was getting tired of swimming.
Then, when Tilly was 8, we heard about a clinical trial for an injectable biologic eczema medication. They were just starting to enroll kids Tilly's age, and I got her in. It was a life-changer.
Now, three years later, Tilly's skin is 75% clear. Little things that are no big deal for most families are miraculous for ours. At 11 years old, Tilly can wear shorts. She can go swimming. Her sweet face is unmarked. We can finally exhale a bit.
We're very fortunate that I knew how to navigate Tilly's care. So many people don't know about options like clinical trials or might not have the workplace flexibility needed to participate. For them, the type of drug that has changed our daughter's life is utterly out of reach.
Now that I'm not spending every second scrambling to care for Tilly, I have time to reflect on her future. It's unlikely she'll ever outgrow her eczema, so we're working to make sure it doesn't hold her back. She's becoming her own best advocate.
Together, Tilly and I mentor parents and kids newly diagnosed with eczema and allergies. Living with these conditions can be very isolating for families. I think it helps them to see they're not alone, and that there's hope on the horizon.
I want caregivers of kids like Tilly to know it's OK to take time for themselves, even if it feels selfish. It's important to step back and acknowledge how your child's condition is impacting the other members of your family — including you.
It's also OK to ask for help. Assemble a team of supporters, from the kindly pharmacist to the friend at school who always washes their hands before hugging your child. When you're too tired to take another step, these people will carry you across the finish line.
This resource has been created with the support of Regeneron and Sanofi Genzyme.