Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories. Today’s spotlight shines on Nicole Esser, mom to Hayden who lives with RDEB.
1. When was your child diagnosed with EB? Please tell us about your family’s journey learning about the diagnosis.
My son Hayden Esser was diagnosed with EB at birth. Learning about our son’s diagnosis was very challenging to say the least. We had a lot of trial and error to make Hayden as comfortable as possible. The first response from the nurses in the NICU at University of Missouri Women’s and Children’s Hospital to us once his condition was confirmed by the pediatric dermatologist was, “we recommend you don’t Google the diagnosis and you need to reach out for support. This condition will either make your marriage or break it.” EB has had its fair share of showing us who’s boss. It has made us an even stronger family together.
2. What are some challenges you’ve faced as a mother of a child with EB? How did you overcome them?
As Hayden’s mother, I have faced many, many challenges, such as having to watch my son live in so much pain and not be able to cuddle him and make all of it go away. Also, watching your child sit inside watching other children play outdoors and wondering why he cannot join them due to the heat and what it will do to his skin. Another challenge that just breaks my heart as a mother is watching my son try to play and act like a normal child and get hurt. For me to try to over come the hurt, separation, anxiety, pain, fear that my son has to endure daily to just be alive is to always remember one thing, god gave me this amazing child for a reason, so we will live life one day at a time and WON’T let EB beat us.
3. What are some of your child’s favorite activities or hobbies? What does he enjoy doing most in his free time?
Hayden loves to swim, go on walks, spend time with his younger brother and older sister, he loves to go bye, bye, and most of all he loves to play with his iPad. Hayden loves watching Ryan’s World, Superheroes, Super Mario, and Dinosaurs. In his free time, he watches YouTube on his iPad or plays with his four-legged furry friends.
4. What is something your child does that makes you smile?
Hayden is one child that can put a smile on anyone’s face. With the crazy things that come out of his mouth, to how he interacts with his siblings, how loving he is to others, and also how he just doesn’t show or let his condition stop him from being a kid no matter what’s going on or hurting him. Hayden is the strongest boy I know.
5. What brings you hope when you are having an especially challenging day?
Hayden and his strength delivers me hope daily when I am having an especially challenging day. Just being in his presence, I have more strength and confidence in myself to keep fighting the fight to beat EB with him.
6. Have you met anyone else with EB? If so, what was that experience like?
Before my little hero was born, my family and I had never hard of EB. I started reaching out to other families through Facebook groups and Hayden was probably around 3-5 months old when we received a message on Facebook about a young woman with EB just 30 minutes away from us. It was nice to meet another individual with the same condition. After meeting her, we were given an EB advocate that was from another town about an hour away and her daughter had EB and the same type of EB, RDEB. When we all met up, Hayden took right to her with no hesitation, mind you Hayden has been on Prozac since age 2 because he used to scream if someone other than the immediate family came around. Meeting others was/is amazing.
7. What message would you like to share with others impacted by EB?
For other impacted by EB, my advice to them is stay strong. Never give up, have faith, and take it one day at a time. When you feel like your getting to your breaking point or just want to give up, reach out to friends/family, reach out to the many of other EB families that would love to help in any way they can.
8. What message would you like to share with others who do not live with EB?
My advice for others unaware of EB is to reach out and get to know someone with EB or a family living with someone who has it. Families and individuals living with EB just want to be just like everyone else, and treated just like everyone else, looked at like everyone else in the world. Individuals living with EB are the strongest people in the world, they just want the world to be aware of this condition and what these individuals must endure daily to live. EB is known as the “worst disease you’ve never heard of” or “Butterfly Children” due to the skin being as fragile as a butterfly’s wing. My advice to the world is: if you see or meet someone wrapped in bandages due to EB, “Come Say Hi”, do not be shy, we love to talk about EB. Inform others of the extreme pain these individuals live with everyday of their lives until it finally, sadly takes their life.
9. How did you hear about debra of America?
My family heard of debra of America when Hayden was around 48 hours old. While in the hospital NICU, we were told about all the different places to receive help, support you mentally and emotionally, and how to get all set up with state help and all the wound care products to help care for an individual born with EB. Debra of America helps in so many ways from emergency wound care supplies, provides contacts to specialty clinics, support groups, counseling options, lots of helpful information regarding new clinical trials, new wound care products and ways to bandage different parts of the body. Printable sheets for families to fill out to provide the individuals condition and the “DO’S and DON’TS” on caring for them at doctors’ appointments and ER visits.
10. Have you had a chance to check out some of the Virtual DCC webinars on the “Events & Webinars” tab? Which presentations did you enjoy most or which ones are you going to check out?
Well after 5 years now, I was just made aware to set up an account/profile to receive information and alerts on the “Events and Webinars” for the Virtual DCC webinars since the horrible virus COVID-19 hit the world, no one could travel and meet in one location to learn all about the new clinical trials that are out and where we stand on a possible cure one day for our children and families. I have read about a few presentations on Facebook but have not yet had a chance to watch one yet. The ones I am most interested in are the new possible treatments to help RDEB individuals live a better, longer life until a promising cure for all EB patients.
Thank you, Nicole, for sharing your family's story! You can connect with Nicole by sending her a message or find her in the EB Kids Corner and Dystrophic Group.
If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!