Evan’s Story

One family explains why they participate in CHOP’s Buddy Walk

EvanOn Nov. 8, 2010, Evan Marcus Rothholz was born. We knew he was amazing, special and wonderful, but what we didn’t know until a little while later was that he had Down syndrome.

Down syndrome is a genetic condition in which a child has a complete or partial extra copy of the 21st chromosome. While medical professionals often tell parents of the delays, challenges and health issues that come along with Down syndrome, they often forget to tell parents about the determined spirit, dynamic personalities, and great potential for achievement people with Down syndrome have.

In our 4½ years with Evan, we’ve learned that milestones come later, but they do come. Evan has made great strides since last year. He now knows all his letters and their sounds and knows numbers 0 through 12. He’s writing letters with help and can spell his name.

He’s learned many skills at The Little Gym and has just started playing soccer! Evan has the support of family, friends, a great therapy team and the Trisomy 21 Program at CHOP. Everyone who supports him guides him toward new milestones, helping him achieve.

Through our engagement at the local and national level, we’ve learned that it is very important to continue to raise awareness for Down syndrome. Though many in our circle of friends and family understand that Evan and his friends with Down syndrome have great potential, there are many more who are still learning about their great promise. Part of the funding from the Buddy Walk is dedicated to raising awareness of Down syndrome.

It is so important to raise funds for the Trisomy 21 Program at CHOP. Much of the funding we raise as a team will support research, services, community education and outreach.

CHOP’s Trisomy 21 Program means so much to us: staff there have identified issues critical to Evan’s health and development and have helped us connect with other families also touched by Down syndrome. The funds we raise will allow CHOP to continue the program and hopefully expand services to better meet the needs of the Down syndrome community.

We couldn’t be a team without a group of wonderful participants and supporters. They say it takes a village to raise a child, and that is especially true of a child with Down syndrome. Thank you for being a part of our village and our team.

Go Team Evan!

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