Child Health | 5 years ago

Boy with Small Stature, Big Personality Helps Raise Awareness for Rare Disease Day

In honor of Rare Disease Day, Atrium Health's Levine Children's Hospital introduces you to 7-year-old Landen Johnson, who has primordial dwarfism.
Rare Disease Day – observed on the last day of February – officially began in 2008 to raise awareness for rare diseases, and improve access to treatments and medical representation for individuals with rare disease and their families. A rare disease is defined as one that affects fewer than 200,000 Americans at any given time. Atrium Health’s
Levine Children’s Hospital is joining hundreds of organizations from countries all over the world to help raise awareness about rare diseases. Levine Children’s Hospital treats hundreds of children with rare diseases each year.

In honor of this year’s World Rare Disease Day we introduce you to Landen Johnson, a 7-year-old boy who was diagnosed with primordial dwarfism at an early age of 6 months. Primordial dwarfism is a disorder in which growth is proportional, but extremely delayed and results in a smaller body size in all stages of life. Those with this condition are among the smallest people in the world. Landen's type of primordial dwarfism is “Ligase IV.” He is one of just three children in the United States and 11 in the world with this type of the disease. According to his mother, Amanda Johnson, and father, Pastor Luke Johnson, Landen has never met a stranger. “Landen has a huge personality, a great sense of humor and loves to make jokes!” On this year’s World Rare Disease Day, Pastor Johnson is hoping his message reaches beyond his pulpit: “We want people to know what primordial dwarfism is and that these individuals affected are some of the strongest and most determined people you will ever meet. Their positive attitudes and strong will is inspiring. Nothing limits them.”

After Landen’s diagnosis in July 2010, he had hip surgery and was in a body cast for four months. Then came a series of regular evaluations, procedures and doctors’ appointments, as well as a move to Lincolnton, NC, where Pastor Johnson began preaching at Highland Drive Free Will Baptist Church . The move to Lincolnton meant Landen needed to see a new team of doctors, and the family was referred to Levine Children’s Hospital’s Niraj Patel, MD, MS. Soon after his initial checkup of Landen, Dr. Patel advised the family that it was time to proceed with preparations for a bone marrow transplant. “Currently, Landen’s body is not producing life- sustaining blood cells very well,” says Dr. Patel. “Landen also has a problem with his immune system, leaving him unable to fight infections properly, which eventually leads to severe and frequent infections. The only current treatment for his genetic disorder is a bone marrow transplant, which could cure him from this otherwise life-long and often fatal disease.” The bone marrow transplant is expected to take place after flu season.

While Landen waits for his bone marrow transplant, he is on medication to keep him from getting any infections and on a weekly infusion of immunoglobulin, which is an antibody that helps support the immune system. Dr. Patel always looks forward to his checkups with the active 7-year-old. “Landen wants to be a preacher just like his daddy, he loves music and singing, and has a great imagination!” Pastor Johnson, his wife, Amanda, and Landen are all looking forward to the transplant, as the procedure will help Landen live a long and full life. “God has used Landen to touch the lives of many, many people. He is a gift from God and we are so thankful for him and for the wonderful physicians and nurses of Levine Children's Hospital who care for him so compassionately.”

Share this story using #rarediseaseday, and check out these videos of Landen in action!