Writing from the heart 

Landon H. is in fourth grade at Hajek Elementary School in Burleson, Texas. When, his teacher, Ms. Wendee Neubauer gave her students a writing assignment, Landon knew exactly the topic he wanted to choose. Landon’s 3-year-old half-sister, Madison H. is affected with EI. 

Below is Landon’s story, in his own words, exactly as he wrote it.

It all started out when I was in first grade. The office called for me to come up front. One of the teachers said congrats you have a baby sister. I was curious because she was not supposed to be born that early. My granfather was there. He said that she was very sick and it would take a while to see her. I didn’t understand.

It turned out that I couldn’t see her for a couple of days. But after those days were up we went to the hospital. When I walked throe the door a nurse put a mask on me, ad I walked to my sister and looked I could feel my eyes watering up as if they were about to bearst out in tears. That’s when I noticed her skin it was bad. If you touched it, it would peel off. This was not a sickness this was a disease. The doctors said that she would be in there for two or three months.

After three brutal months my sister came home! But one problem her skin has not been cured. It will be hard but its worth it to keep this baby alive. When all of our family found out that she was coming home they came to visit. I was so glad that they got to see her out of the hospital but also kinda sad seeing the faces on everyone cause of all shes ben throe. Its hard but knowing that angeles are always around her is very helpful.

After a while the doctors found out that she will haft to have surgery. What else could happen to this baby. It’s bad that she has a desease but now you haft to put a cast on her. That’s some mest up stuff. Whats realy sad is that it took them a long time to figure out how to put the cast on her because of her skin. The day she had surgery was not on a weekend it was on a school day and I was at school. I could’nt even focuss because of it. When I got home I saw her cast from waste to feet, I could’nt believe it. It felt like my heart was split in half. It took a while but they took it off after two or three months.

One year later my parents researched for so many things for my sister. One day at my granparents house my parents had a conversation and said that they have found a cure.*  They said that they will take a peace of her skin and do something with and replace it back on her body. They say it will heal and become regular skin.

Scientists are still researching for this cure. I am so glad that there are people that are to make a better world. I thank God for bringing my baby sister in my life and I thank him for bringing good news to this world and my family!

*Editor’s note: This refers to research being conducted by Drs. Dennis Roop and Jiang Chen at the University of Colorado. For more information about this study, click here.

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported 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.