‘I asked my husband if he had it. He said, ‘Yes.’ One nurse even said, ‘I think he has what mommy has!’ He had white chunks of skin around his fingers and toes, and was bright red.’

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“54 years ago my dad was born. He was the first person in the family to be born with Ichthyosis, a genetic skin condition. Fast forward 26 years and I was born. I also had Ichthyosis. Growing up and having a father with the same condition was awesome. He got it, but I lived 7 hours away with my mom.

Courtesy of Jordan Flake

Growing up with a visible difference was hard at times. I got rocks thrown at me during recess, I got repeatedly kicked by the girl behind me in gym class. I was so nonstop harassed, that the kid got suspended. The most memorable episode was in 9th grade and although it’s kind of funny now, it was awful and embarrassing at the time. A boy on the bus changed the lyrics to a well-known Mystikal song to ‘take a bath, wash yourself.’ I was constantly getting picked on for being the smelly kid. All the lotions we have to use to soothe and hydrate my skin smell a little different.

Courtesy of Jordan Flake
Courtesy of Jordan Flake

Even when I met my future husband, I was constantly asking him if I smelled bad.

I was always very shy and just ignored bullies. I would give people the bare minimum when asked for the millionth time, ‘are you sunburned?’ In high school I dated a little, but never really thought anyone would want to marry me, let alone have kids with me.

Courtesy of Jordan Flake

During my senior year shortly before graduation, I got a friend request on MySpace, which I did get from time to time because it is easy to edit out redness. He says now that he thought my redness was from me loving to be outside. Boy was he wrong! I always hated shaking people’s hands, so the first time he grabbed my hand was nerve wracking. Our first few months were filled with arguments over my insecurities, and even now, 11 years in, those same hesitations come up. Our conversations while getting ready to go somewhere are different than others, but they always end with him telling me, ‘You look beautiful, now let’s go! We’re late!’

Courtesy of Jordan Flake

Three months in to our relationship, we got engaged. We were 18 and 19. We moved in together about 6 weeks later. In 2011 we got married at a courthouse during his 2-week leave from his first deployment. The conversation of growing our family came up a lot and both of us agreed on wanting kids. We never even thought about adoption or genetic counseling. Ichthyosis with confetti is a dominant genetic condition, meaning only one parent needs to have the gene and there is a 50% chance of passing it on. We decided that if we had a child with Ichthyosis, it would be ok. We would know how to take care of their skin and how to raise him or her to love themselves.

Courtesy of Jordan Flake

In January of 2014 we got a positive pregnancy test. I chose a high-risk doctor just in case. My pregnancy was fairly normal, although I did have some skin issues in the third trimester. I had awful heat rash and my skin became extremely dry. I had to sweep our bedroom at least once a day because of the shed skin all over the floor. Due to her potentially having Ichthyosis and her positioning, we decided on a C-Section.

On September 22nd, 2014, Chris and I drove to the hospital in the rain. They started me on fluids and the anesthesiologist came in to the pre-op room. He explained that due to my higher risk of skin infection, he would have to scrape off the top layer of skin before inserting the spinal block to prevent infection going into my spine. That was when the fear sunk in for me and my husband. Pair this with being nervous she would be born with Ichthyosis and needing intensive care, I became an emotional wreck. When they finally allowed my husband to come back into the operating room, they warned him that I was having a panic attack and hyperventilating and he needed to get in there to calm me down.

Courtesy of Jordan Flake

When she was born, I asked my husband if she had it. He said, ‘No, I am pretty sure she doesn’t.’ The doctor then said, ‘It can take a few hours for you to be able to tell for sure.’ Once in recovery when I got to hold her, I knew she didn’t have it. We named her Sadie!

Courtesy of Jordan Flake
Courtesy of Jordan Flake

As she has gotten older it has become more difficult to keep up with her love of the outdoors. It is hard for me to sweat and in turn causes me to overheat easily. It is challenging to figure out activities to do for an active kid when it’s 95 degrees out, but we make it work!

Courtesy of Jordan Flake

2.5 years later, we found out we were pregnant again! My pregnancy seemed similar to my first, except I craved more protein. I was one of the only people who thought I was having a boy, I just knew. I also had this feeling the whole time that he would have Ichthyosis. I had one without, no way I’d get away that easily a second time.

Courtesy of Jordan Flake

I remember looking at one of the latest ultrasound pictures with a closeup of his hand balled up in a fist. In that moment, I knew. I still held out hope that I was mistaken. Don’t get me wrong, I was completely fine with him having Ichthyosis, but I also began feeling guilty during this pregnancy. I felt guilty that my choice to potentially pass this on could cause one of my children to have a less than perfect life.

Courtesy of Jordan Flake

On February 1st, 2018, we drove to the hospital in the dark around 5 a.m. I once again lost it in the operating room, but this time it was in the form of hysterically crying. The nurses were great at calming me down and making me laugh by telling me that some women get mean. One even bit a nurse because she was so scared! This time I was offered a clear drape and the option to do skin to skin while they closed my incision. I said absolutely yes to both of those things! Right before they pulled him out, they opened the panel on the curtain to reveal the see-through portion. He let out a loud, raspy scream, accompanied by some snorting. I asked my husband if he had it. He said, ‘Yes.’ One nurse even said, ‘I think he has what mommy has!’ in a very chipper tone!

Courtesy of Jordan Flake
Courtesy of Jordan Flake

He was having a hard time regulating his body temperature, so I wasn’t able to do skin to skin yet. Thankfully he didn’t have any other issues so no NICU time was necessary. The nurses kept saying that it takes a few hours to be able to tell, that a lot of babies were this pink or red when they first came out. My husband kept saying, ‘No, he definitely has it.’ He had white chunks of skin around his fingers and toes, and he was bright red. My husband went with him to the newborn nursery and applied his first of many lotionings. The nurses were confused as to why he kept asking for Vasaline!

Courtesy of Jordan Flake

Other than him having to be taken to the nursery after every feeding to be put under the warmers for the first 24 hours, everything went smoothly. There was one time in the hospital that I let myself be overwhelmed with guilt. One of those chunks of skin had fallen off of his heel and it was bleeding pretty badly. My husband and my cousin were trying to apply lotion to him and he was just screaming and screaming! I just sat in my bed watching with tears streaming down my face. I did this. I caused him this pain and frustration of having to put lotion on for what will be the rest of his life! Thankfully the moment passed once they finished, wrapped him back up, and handed him to me. We named him Jackson! I hope I can teach him to kill them with kindness, have never-ending strength, the ability to know he has no limits, and that he deserves the same happiness as anyone else.

Southern Stitched Photography

A few months after he was born I began to get more and more frustrated with the negativity and victim mentality I was seeing among some people in the Ichthyosis community. The same things I had witnessed for years, but just laughed about. Now these people were future role models for my son and all of the other children with Ichthyosis, and that wasn’t good enough. Him being born with the same condition as me, gave me the confidence and drive to share my story and spread positivity. I wanted to give new scared parents, who were just learning the word ‘Ichthyosis,’ hope that their children would be ok. Being told ‘I don’t know’ or ‘your child may die’ by a doctor is scary but common with rare diseases. I wanted new parents to be able to Google the word Ichthyosis and find me, and be given peace of mind. I wanted to share my tips of now 3 generations of Ichthyosis.

Courtesy of Jordan Flake
Courtesy of Jordan Flake

I first started an Instagram page and within a few days had this overwhelming sense of ‘this is what I am supposed to be doing.’ I got messages saying they had never met anyone with Ichthyosis and didn’t even know about the foundation. I started a YouTube channel where I make videos about Ichthyosis, but also regular videos to show I do indeed live a normal life.

Courtesy of Jordan Flake
Courtesy of Jordan Flake

I have had moms come up to me and say they saw on Facebook that I got married or had a kid and it gave them hope. That is the greatest feeling in the world, to know that I can take away someone’s fears for their child’s future, even for just a minute. That is my mission.”

Southern Stitched Photography

This is an exclusive story to Love What Matters. For permission to use, email Exclusive@LoveWhatMatters.com.

This story was submitted to Love What Matters by Jordan Flake of Columbia, South Carolina. You can follow her journey on Instagram and YouTubeSubmit your own story here, and subscribe to our best stories in our free newsletter here.

Read about another baby’s journey with Ichthyosis:

‘Her skin hardened within seconds. After hardening, it began to split. Behind the curtain, I sensed their frantic panic. My husband’s silence scared me. He kept saying, ‘It’s bad.’

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