Children's Miracle Network

Now 10 years old, Jack loves video games, swimming, sports and superheroes. He's outgoing, loves to laugh and is known for setting a good example for his peers. More importantly, Jack is a hard worker, which helps him tremendously in his daily life as he navigates therapy to support the effects of a stroke when he was 22 months.

Jack was born healthy, but in December 2014, his parents realized something wasn't right. One evening he was playing on the floor of their South Carolina home when he suddenly could no longer support himself and couldn't communicate. As a nurse, his mom also noticed a facial droop and immediately called 911. The initial CT scan didn't catch anything and he started to regain the use of the left side of his body. However, the MRI the local hospital conducted revealed exactly what his parents feared — Jack had indeed suffered a stroke.

Initially, everyone thought he'd make a full recovery, but it became apparent that would not be the case. The location in the brain where the stroke occurred left Jack with a lot of weakness on the left side of his body and he would need several types of therapies as part of his recovery.

Jack's family moved to St. Louis the following June — just six months after his stroke — and immediately continued his care at St. Louis Children's. Twice a week Jack participated in occupational and physical therapy sessions. His therapists worked with his family to develop a plan they can follow at home in between sessions. To date, Jack has completed more than 1,600 hours of therapy. During the summer he participates in longer, more intensive therapy sessions alongside kids his age, which allows him time to be with peers his age and makes therapy more fun.

For the past five years Jack has participated in Tri My Best, the adaptive triathlon hosted by St. Louis Children's and Washington University. The yearly event is designed for children with motor disabilities, and athletes train throughout the year to complete versions of the swim, bike and run tailored to each participant's mobility level. Jack has also attended Camp Independence, which also allows him the opportunity to experience sports in a whole new way.

Jack will continue his therapy every other week with the hope that he will soon be able to reduce the number of sessions because of the hard work he continues to put into his recovery every day.

How CMN Funds Help Jack and Kids Like Him:
St. Louis Children's Camp Independence was developed specifically for children with cerebral palsy and other movement disorders. Focusing on adaptive sports, this day camp provides confidence in their athletic abilities and has a lasting impact on the children who attend. Thanks to funds from CMN, Camp Independence and other specialty camps show Jack and his peers what they are truly capable of achieving.

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 ad family they serve.