What It’s Like to Care for a Child With Severe Eczema

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.