St. Louis Children’s Hospital

Logan's Story

Logan’s dad puts it best when he says, “Logan is a people person.” Not only does the 7-year-old love to be around others, but he’s also just one belt away from a black belt in Taekwondo and loves playing Minecraft and Roblox.

Three years ago, Logan was in speech therapy and his therapist noticed some regression in his progress over the winter break. His therapy team was concerned he was showing signs of echolalia, when a person repeats noises and phrases that are heard. He went to see a neurologist and coincidentally also went to the cardiologist because of a heart murmur. The doctor asked if he had been tested for neurofibromatosis (NF) — a genetic disorder that causes tumors to form on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves. Complications of NF can include hearing loss, learning impairment, cardiovascular problems, loss of vision and severe pain.

Logan’s mom had asked his pediatrician about a spot on his body before and she assumed it was a birthmark, however, she later learned it was one of the symptoms of NF. Along with flat, light brown spots on the skin, additional symptoms include tumors on the optic nerves, learning disabilities, larger-than-average head size and short stature. For Logan, his NF included the thickening of the optic nerves between his eyes and his brain.     

After an MRI confirmed his NF diagnosis, Logan continued to undergo scans every quarter to check the progress of his condition. Unfortunately, he began to lose vision, and his medical team at St. Louis Children’s determined he needed to undergo chemotherapy to shrink the tumors that were affecting his eyesight.

Logan began a year of weekly chemotherapy treatments to lessen the thickening of that optic nerve and to better his vision. In February 2022 he was able to ring the bell, signaling the end of his treatment. Today Logan is finished with treatment but continues to visit St. Louis Children’s every three months to monitor for any tumor regrowth.

How CMN Funds Help Logan and Kids Like Him:

St. Louis Children’s Child Life Services department helps kids navigate medical procedures by using play, music, art and more. Logan and his parents were thankful for the child life specialists who played video games with Logan to distract him from the pains of chemotherapy treatments. Thanks to funds from CMN, the Child Life Services department continues to take a child-centered approach to meet the social and emotional needs of each patient and family they serve.