Lilli’s Story

Princess Lilli

Lilli was just 4 years old when she woke up one morning cross-eyed and seeing double. Multiple appointments and a few days later, she was diagnosed with an optic pathway glioma, a brain tumor that was pressing on her optic nerve and growing quickly. Lilli’s only treatment option was chemotherapy to stop the growth of the tumor that, if left untreated, could result in blindness in her left eye. Lilli began her year of weekly chemotherapy treatments in February 2019.

Lilli has always loved dressing up, so to she chose to wear a yellow Belle Princess dress from Beauty and the Beast for her first appointment and was greeted with smiles and excitement about her costume.

For 52 weeks, Lilli’s princess dresses became her suit of armor, giving her the courage to make it through the treatments and frequent trips to Children’s Hospital. The night before each appointment, Lilli spent time picking out the perfect dress to wear and did not repeat a dress once, which made every week a new surprise for the amazing care team at UPMC Children’s Hospital of Pittsburgh. Lilli's dresses were her way to share the “Princess joy” with everyone. The excitement her dresses brought her, us (her family), and the entire care team at Children’s was indescribable. Lilli’s dresses transformed a very tough situation for both her and her family into something to look forward to, something positive. Lilli completed treatment in February of 2020 and her tumor has remained stable. We knew that if costumes could make her chemo and MRI days a little bit easier, they could help other kids through tough times as well.

After Lilli completed chemotherapy, we were inspired to start Costumes for Courage. Costumes for Courage 501(c)(3) is a non-profit organization that provides costumes to children receiving chemotherapy treatment or facing significant medical challenges to give them strength and courage to get through whatever challenges they are facing. Our hope is that these costumes will give these children the strength and courage they need to face their challenges.

Since kicking off our mission in October 2020, we have sent over 140 costumes to over 30 states and 3 countries! We are cannot wait to see where Costumes for Courage will go and we are so excited to continue to help more children facing chemotherapy or other medical challenges.

Written by Courtney Durante, Lilli’s Mom