Sweet Maddie!

Maddie’s journey began when she had her first seizure at ten weeks old. Many seizures later, when she was four months old, Maddie was diagnosed with Cyclin-Dependent Kinase-Like 5 (CDKL5), a rare genetic disorder which impacts her in many ways.

“Nationwide Children’s Hospital is a source of light for us. When we received Maddie’s diagnosis, we didn’t know what to expect and went through a period of darkness. Over time, we have come to see Maddie’s providers at Nationwide Children’s Hospital as a light out of that darkness. We have been working with many of her providers for a few years and the passion and love they have for her and the patients they serve shines bright,” says Kristen, Maddie’s mom.

Now five years old, Maddie is flourishing with support. While, she continues to have seizures daily and encounters new challenges often, Maddie has overcome so much and has had many successes. Despite being told that she may never walk or talk or use her hands, Maddie is learning to walk independently and with a walker, is expanding her ability to communicate beyond a few words with a new communication device and play with toys more purposefully.  Maddie also relies on a feeding tube for her nutrition, but with the help of feeding therapy, she is able to eat some food by mouth and have joy in eating.

“Sometimes it’s hard to stay positive with so much going on, yet each provider at Nationwide Children’s provides hope and encouragement to keep pushing forward towards a solution that will be best for our family, and a solution that ultimately allows Maddie to shine brighter each day. We are so grateful for all that she has accomplished and have Nationwide Children’s Hospital to thank for their guidance and patience,” says Kristen.

She is a happy kid who is beating the odds with the help of many who had hope and didn’t let her diagnosis define her.

Maddie loves her new role as a big sister and enjoys being around people – especially other kids.  She is a very loving and joyful girl who loves to give kisses and share her contagious laughter.  She enjoys flipping through and reading books, attending school and watching her favorite characters on Sesame Street. Her favorite place to be is outside on the swing.