Van's Fight Against KARS

The past year for the Foster family has included some of the highest highs in life, as well as some of the biggest challenges a family could face. After welcoming Van into the world in September 2024, Taylor and Kristen noticed symptoms of potential visual impairment and developmental delays for their sweet boy. Taylor, Kristen and Van went through endless tests, a whirlwind of hospital visits, uncertainty, and heartbreak. In May 2025, Taylor, Kristen, and Van completed genetic testing where they ultimately found Van had inherited two mutated KARS1 genes from Kristen and Taylor.

KARS syndromes are ultra-rare diseases caused by a mutation in the KARS gene. The disease prevents cells from producing enough energy, affecting the nervous system and all major organs. Van's KARS1 genetic mutation is specifically associated with infantile-onset progressive leukodystrophy, a devastating disease also known as a white matter brain disease. There are about 50 cases of this evil disease worldwide, so research and treatment are limited. Unfortunately, the life expectancy behind this disease is projected to be short, but with the help of science and support, we are hoping to prolong our time with Van as long as we can.

Taylor and Kristen have not limited themselves to any possible treatments for their strong boy. Because the genetic mutation is extremely rare, Cincinnati Children's Hospital admits that they are in uncharted territory, leaving Taylor and Kristen to have to travel to find the best care for Van. They have connected with other families going through this and joined research studies and are reaching out weekly to different organizations in hopes of a potential clinical trial. Van was recently accepted into the Leukodystrophy Clinic at Nationwide Children's Hospital in Columbus, Ohio, where the Fosters will be spending time to allow for research and engage in support groups. In addition, Taylor and Kristen will be traveling to and from Philadelphia Children's Hospital for their Mitochondrial Disease Clinic and hope to get Van into their research program as well. Most importantly, a gene replacement therapy study just launched in Spain that would highly benefit from financial assistance to go towards research for this study. This gene therapy could make HUGE improvements towards advancement in treatment and care for current and future diagnoses.

The Fosters are putting their hearts into this fight against KARS. Van deserves every bit that his parents are doing for him, and they deserve our support and help as well. Not only are the Fosters going through this nightmare, but the expenses already accumulated are enough to make anyone want to give up. Van has had several MRIs, genetic testing, numerous scans, and countless follow-up appointments. No one should have to go through this at all, and they definitely shouldn't go through this alone.

While there is time of pain and suffering, there have also been pockets of deep love, resilience, and hope. Through it all, Van has shown incredible strength, and Taylor and Kristen have walked this journey with courage and grace. While the road has been difficult, it has also been marked by small victories, answered prayers, and the unwavering support of friends and family. They’re profoundly grateful for every step forward and for the love that continues to carry them.

We are asking for whatever you can do to support the Fosters, including considering donating. All proceeds will go to the Foster's medical bills, medical expenses, transportation to and from various hospitals, and all therapies that Van qualifies for. Please take the time to get to know Van Foster—you won't regret it.