Ian’s Story

Ian was born in April 2005 and was diagnosed with Pitt Hopkins Syndrome (PTHS) in February 2008. His specific genetic diagnosis is a deletion on the long arm of chromosome 18 involving band q21.2.

Our family includes Ian, his brothers Kayden and Braxton, and his parents, Trevor and Jessica. We live in Iowa, USA.

Ian brings joy to everyone around him. He loves music, being around people, and sharing in everyday moments with those he cares about.

Along with PTHS, Ian has faced several medical challenges, including epilepsy, hydrocephalus, and severe GI issues. He has been hospitalized many times throughout his life and has undergone multiple surgeries, including foot surgery for pronation at the age of 16 and spinal fusion surgery at age 20 to address severe scoliosis and kyphosis. Ian has also experienced breath-holding behaviors, which have improved following his spine surgery.

Ian’s developmental journey has been steady and inspiring. He sat up between 8–10 months, crawled at 18 months, and walked with assistance from ages 3–6. Around age 6, he began walking more independently. Today, he needs assistance with walking and uses a wheelchair for longer distances.

Communication has been one of Ian’s most exciting areas of progress. While he is nonverbal, at the age of 10 he started using a communication device and now he communicates by spelling on a letter board, allowing him to express his thoughts, needs, and personality. He is really funny and is extremely smart. He graduated from high school with a full diploma in 2024.

Ian loves music, food, being outside, playing catch, and watching basketball. Most of all, he loves spending time with his brothers, his cousins, and his grandparents.

Ian is a sweet, determined young man who continues to inspire and motivate everyone who knows him. You can follow more about Ian’s journey at www.facebook.com/inspiredbyianfletcher.