One Year Later – A Good News Story for Olivia and Jill

We interviewed Jill and Olivia almost a year ago for our newsletter. This is their story and an update on how Dupixent, an eczema drug recently available to young children, changed everything.

March 2021

We are a physically reactive family.  Both of our daughters have eczema and serious allergies. Olivia, almost five, has hard to manage eczema and anaphylactic reactions to foods, like her dad. Nine-year-old Caitlin has severe grass and dust mite allergies, and mild asthma and eczema.  

Every day begins with a play on the beach and a swim in the ocean. It’s the peak of summer in Australia now, so we are usually on the sand by 7am to avoid the heat and UV exposure since Livi can’t tolerate sunscreen. The sunshine and saltwater seem to help her skin.

Thirty minutes later we’re back home for the first of Livi’s two daily baths with a special oil. The second bath is always followed by topical steroids. Like many parents we worry about using steroids but Livi’s quality of life without them really suffers. If her eczema is flaring, we wrap her in wet dressings, like a mummy, to hydrate her skin and attempt to break the itch-scratch cycle.   

The combination of eczema and severe allergies in both our daughters affects every aspect of how we live. Two years ago, we moved from our urban home in Ipswich to a seaside community 5 hours north so Livi could swim daily and Caitlin could avoid her grass allergies. Livi has never been to preschool and probably won’t be able to go to kindergarten. We worry that the stress of school will make her hard to manage eczema. And her anaphylactic reactions to eggs, nuts, dairy and sesame are difficult for any school to accommodate.

With so many serious allergies in the family, food issues are the bane of our existence. Restaurants are not an option and birthday parties are a rarity for us. You don’t realize how much food is a central part of socializing.  

Our home is a safe place for our kids, but building our sanctuary means limiting contact with “outsiders” as well. Organizing playdates for Livi is complicated, because in addition to the food risks, pet dander on a playmate’s clothes or exposure to any synthetic fragrance/product causes flares.

I only became involved with GPER a few months ago. How I wish I had known about it earlier when I felt like we were on our own dealing with eczema!  Most people think eczema is a mild condition that people outgrow. They don’t understand that for parents with kids with severe eczema, nearly every decision we make is coloured by this illness. I hope I can help contribute to the research on the impact eczema has on so many families by participating in GPER’s Life Decision Study.

UPDATE:

March 2022

Livi started on a new injectable drug for eczema on January 27, 2022, a date that we will always remember. It’s been nothing short of life-changing for her – and for our family. Our little girl who had virtually no chance of exiting her “safe bubble” and attending school is now a regular! She absolutely loves it. 

Before eczema made Olivia my full-time career, I was a teacher. I wanted to return to the classroom, but I needed time to fully recover from 6 years of broken sleep and I didn’t feel ready to instruct a class quite yet. Fortunately, a position came open for a teacher’s assistant in our school district and I applied. To my surprise, I was hired to work at Caitlin and Olivia’s school and I started this week. 

The recent changes that have occurred in our family are ones we couldn’t have imagined just last year. For that, we are so grateful.

Check out GPER’s FREE Support for Eczema Caregivers Program here.