The Little Things

There are many ways the team at Riley Children’s Certified Duchenne Care Center go the extra mile. One such way is by providing patients with individualized toys and activities for each of their patients with Duchenne and Becker muscular dystrophy when they come to clinic.

Prior to clinic, the team prepares by reviewing the medical chart, as well as reminding themselves of what the patient enjoys: favorite hobbies, activities, etc. With this information, the hospital KidZone team works with the nurse coordinators, Debbie LeMay, RN, BSN, CPN and Katelyn Webb, RN, BSN, to gather age-appropriate crafts and toys for the patients being seen in the clinic. In addition, the clinic provides games and activities to help occupy the patients during the long appointments including LEGOs, board games, headphones, puzzles, and other age-appropriate toys. These activities are given to patients when they arrive to help bring a little joy to what is often a stressful day. This small gesture of knowing who their patients are as children and individuals goes a long way. 

“With extra funding, we have been able to purchase toys and activities for the kids that are engaging and use fine motor skills to build legos, play cards, do crossword puzzles, etc.” states Webb. “Prior to clinic, I pick an item for each patient individualized to their functional mobility and interests and give it to them during the clinic visit. Being able to give these patients something fun and exciting during this long and stressful day is one of my favorite parts of this job!”

One family was asked what it meant to them for their child to be seen at this Certified Center.

“Our family has been a part of Riley since our son was diagnosed in 2015. In the past year, since becoming a certified PPMD clinic, we have seen wonderful changes being made! The collaboration and coordination between all of the specialists has improved, as well as the knowledge and communication of treatments and clinical trials. It’s been great to watch all of the changes over the past year and [we are] excited to see how the clinic continues to grow.”

By getting to know their patients on a more personal level, it is evident that the neuromuscular team at Riley Children’s Certified Duchenne Care Center goes above and beyond to provide quality care and happiness for Duchenne and Becker families. To learn more about the clinic at Riley Children’s Hospital in Indianapolis, Indiana, please visit our website or email careteam@parentprojectmd.org.