Tatum was born a little over 3 weeks early in May of 2023. When she was born the first thing the nurse jokingly said was “She looks like a little old lady”. Her skin was very wrinkled. 

Over the next day or so we noticed how red her skin was. We chalked it up to her being born early and her pediatrician never said anything regarding her skin before being discharged home. At 5 weeks old, Tatum started having very subtle seizures that eventually landed us in the hospital on 2 separate occasions. around 8 weeks of age after ruling out any other potential causes of seizures, she had genetic testing done. That is when we learned she had an extremely rare genetic disorder called Sjögren-Larsson syndrome (SLS). The syndrome affects almost every system of the body but notably, the skin which presents as ichthyosis. 

Around the time that we got her diagnosis her skin really started scaling, flaking and becoming discolored on her palms and soles of her feet. None of our local doctors had really heard of ichthyosis or knew how to manage it. Luckily when Tatum was 5 months old we went to Omaha to meet Dr. William Rizzo who is the only doctor in the US that is an expert on Sjögren-Larsson syndrome.  He gave us many resources including FIRST. We also became connected with a small group of SLS families via Facebook. We have learned how to manage her skin for the most part. SLS ichthyosis differs from other types in that it is very itchy for the kids. We have noticed as she’s gotten older (now 19 months) that she is really starting to itch more. Overheating has also been an issue as we have very humid summers in southern Indiana. We are grateful for the resource that we have in FIRST as well as their parent Facebook group. We have found the most helpful information on ichthyosis from other parents.

Today, Tatum is working on becoming more mobile. She works very hard in physical therapy, occupational therapy and speech therapy every week to gain new skills. She is the happiest little girl and although a rare disease is never what we expected for one of our children, her diagnosis does not define her. She inspires us every day with her strength and resilience! 

What's Your Story? We'd Love to Hear It!

« Back to Meet Our Families

Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.