My granddaughter, Harlee, is a bright and resilient child who has faced more medical challenges than most people do in a lifetime. She has been diagnosed with Cornelia de Lange syndrome, a rare genetic condition, as well as a JIRAD2 gene duplication. In addition, Harlee lives with dysphagia, which affects her ability to safely eat and drink, and temporal lobe refractory epilepsy, making her seizures difficult to control with medication alone. These complex diagnoses mean that Harlee requires close monitoring and specialized care.

Harlee is preparing to undergo two brain surgeries at Children’s Mercy. The first surgery is scheduled for March 3rd. Doctors expect her and her parents, Ashley and Jared, to spend at least a month in the hospital as she receives care, undergoes surgery, and begins her recovery. While this is a serious journey, we remain hopeful and grateful for the skilled medical team caring for her. Ashley and Jared are devoted parents who will be by Harlee’s side every step of the way, while also working hard to ensure her sister, Joslynn, continues to have the care, routine, and stability she needs during this difficult time. On certain days, both parents will need to travel back and forth between Kansas City and Columbia for work, adding extra stress and expenses to an already demanding period.

This fundraiser was created to help support Ashley and Jared with the many expenses that come with an extended hospital stay, including medical and hospital-related costs, care for Joslynn, everyday living expenses, gas and travel, and meals during long hospital days. Our hope is that this support will ease some of the financial pressure so Ashley and Jared can focus fully on what matters most — being present for Harlee, supporting her through surgery and helping her heal. Harlee is strong, deeply loved, and surrounded by family who believe in her. Every donation, message, share, or prayer is a reminder that they are not walking this road alone. We are deeply grateful for any support you can offer during this challenging time.

Thank you for taking the time to read Harlee’s story and for supporting my granddaughter and our family during this season. Your kindness, generosity, and encouragement mean more than words can express.