Hailey and Livy Scheinman (Twins) hugging.
Livy and Hailey Scheinman hugging

Twins Hailey and Olivia (Livy) Scheinman were born in December of 2004. Hailey was a healthy baby, but from the very beginning, Livy had difficult health challenges. She had her first seizure only hours after birth. That was the start of a long and complicated journey for the Scheinman family. They were immediately forced to learn about epilepsy, seizures, medications, hospitals, the health care maze, and more. 

Livy would later be diagnosed with multifocal, partial epilepsy caused by a brain malformation. She has undergone two brain surgeries to alleviate her seizures, but they continue to this day. Her malformation also resulted in cerebral palsy. She cannot walk or talk and has always required 24-hour care. She will be completely reliant on her family throughout her life.

A Caregiving Sibling

While it is well-known that epilepsy affects the entire family, siblings face unique circumstances. Their brother or sister often gets more attention due to their medical needs. Families can't go to certain places because there may be seizure triggers. Traveling can be difficult because of the unpredictability of the disorder. Meanwhile, siblings can be left wondering why they can't have a life like their friends do. They often become depressed or resentful of their brother or sister who has epilepsy.

Hailey Scheinman standing at a podium at a Walk to End Epilepsy.

Through all of the difficulties Livy faced, Hailey was right there by her side. When Livy was in the hospital, Hailey would visit. If Livy had a seizure at home, Hailey would stay with her, comfort her, and make sure she was okay. Hailey always wanted Livy to be a part of her life. Livy visited Hailey's classrooms so kids could be taught about those with special needs. Hailey often spoke to large groups of people to tell Livy's story and how proud of her she was. She knew that one of the best ways to help Livy was to share how she had inspired others.

Hailey has embraced her role as Livy's sibling. Although her family rarely travels together and there are few spur-of-the-moment activities, Hailey says, "I wouldn't want it any other way." She accepts Livy for who she is and is grateful that Livy has given her a perspective of the world that few people have. She considers Livy a blessing and has learned more about life than she ever thought possible.

Making a Difference

Through the years, Hailey has become one of Livy's most outspoken and compelling advocates. She has worked to spread the fundraising campaign, Lemonade for Livy, that Livy inspired, around the country to create awareness and raise funds for programs and services at the Epilepsy Foundation. The initiative has now raised over $700,000.

Hailey and Livy Scheinman hold a Lemonade for Livy lemonade stand.

Hailey is also the President and CEO of the Epilepsy Foundation Kids Crew. The program was started by her family in their community and now has over 2,500 members across the country. Hailey wants kids to learn about epilepsy, teach others, advocate for change, spread awareness, and give back. She encourages kids to get involved and make a difference in their communities. She also wants them to know that they are not alone in their journey. She believes that every child has the power to change the world and says, "You just have to get out there and do it!"

A Marvel Hero

Hailey's efforts have now been recognized by Marvel. She was selected as one of 20 kids who are featured in Marvel's Hero Project available on Disney+. The series reveals the remarkable, positive change the real life heroes are making in their own communities. The inspiring, driven and engaging kids have dedicated their lives to selfless acts of bravery and kindness. These young heroes are finding creative solutions to tackle big issues such as protecting our environment, ending hunger, championing inclusivity, and much more. Hailey's episode will debut on the platform on March 20, 2020.

HaileyMarvelHeroes.jpg

Despite Hailey's recognition by Marvel, she doesn't consider herself a hero. When asked why she does all of it, she answers, "I love my sister and would do anything for her. I'm just trying to help people, spread kindness, and make the world better. I don't think I should be considered a hero because of that. It's something that everyone should try to do." 

To read more about Hailey, visit her family's website at livyshope.com.

Authored By: 
Jonathan Scheinman
Authored Date: 
03/2020
Reviewed By: 
Sarah Kaider
on: 
Monday, March 16, 2020