Ian’s Story

Ian was born in April of 2005 and diagnosed with PTHS in 2008. His specific deletion is a deletion of the long arm of chromosome 18 involving band q21.2. Our family includes Ian, Kayden (little brother), Trevor (dad) and Jessica (mom). We live in Iowa, USA.

Ian is such a happy boy. He loves music and being around people. Along with PTHS, Ian has some other medical concerns. He has epilepsy where he experiences grand-mal seizures. He takes medication to control this. Ian also has hydrocephalus that was discovered when he was 12 months old. He had a VP shunt placed in 2006. Ian has been hospitalized multiple times for GI issues, pneumonia, and surgery for a hernia. He takes Miralax daily for GI issues. Ian does “play” with his breath from time to time, but at this point it is not an issue. Overall, he really is a pretty healthy boy.

Ian sat up when he was about 8-10 months old, crawled at 18 months, walked with assistance from about 3-6 years old and then started walking independently around 6 years old. Ian wears custom orthotic inserts in his shoes. He did wear AFO’s when he started standing and walking but now only wears inserts. Ian also uses a wheelchair for long distances but uses it less and less the older he gets.

Ian has really made great improvements with communicating. He does not verbally communicate at this point but is getting better with using “Ian language” to let us know his needs and wants. We have worked with the iPad app but not sure that he is quite ready for using it as a communication device. Ian absolutely loves music and food. He also enjoys playing outside, swinging, playing catch, and watching basketball. He loves spending time with his very-protective little brother. Ian is such a sweet boy that inspires and motivates so many people each day!