ORLANDO, Fla. (Ivanhoe Newswire) — One in 50 children are living with a disability. Whether it’s autism, down syndrome, epilepsy, dyslexia, muscular dystrophy. The list goes on and on, and although living with a disability isn’t necessarily rare, it can be very lonely and isolating. That’s why one young woman is working to connect these kids, to show them they are not alone.
“Livy has had epilepsy and cerebral palsy since she was born, so she’s in a wheelchair and she can’t speak,” shared Hailey Scheinman, Livy’s sister.
Fifteen-year-old Livy didn’t need words to teach her twin sister Hailey some pretty valuable lessons.
“She’s taught us acceptance and to give back to others and to appreciate what we have,” said Hailey.
And with that in mind, Hailey became Founder, President and CEO of Kids Crew.
Connecting kids without epilepsy to kids with epilepsy.
“Kids are really accepting and once they learn to accept other people early on than that will last their whole lives,” explained Hailey.
Membership has grown to 2,900 in 50 states … teaching awareness, educating families and helping others. The movement caught the attention of the National Epilepsy Foundation.
“You want to make sure that other people are out there for you that you’re not alone in this,” said Laura Thrall, CEO, of Epilepsy Foundation of America.
The impact can be life changing. Many children with epilepsy are at an increased risk for bullying, difficulties in social engagement, inadequate school skills and poor self-esteem.
“I think what we’re trying to do is say differences are okay,” explained Thrall.
Kids Crew members take part in “Lemonade for Livy” which has raised $740,000 dollars for charity and a priceless amount of awareness for kids living with epilepsy.
“We believe that kids can change the world. It’ doesn’t matter what your age is, you are able to make a difference,” smiled Hailey.
No matter what your ability.
Kids under the age of 14, of all abilities, can join Kids Crew and win pins after completing challenges such as fun runs, sharing their story, or performing an act of kindness for someone living with epilepsy. Due to COVID, meetings have been moved online. To find out more, go to www.epilepsy.com/kids-crew.
Contributors to this news report include: Marsha Lewis, Producer; Roque Correa, Editor; and Matt Goldschmidt Videographer.
KIDS CREW: HAILEY CONNECTS KIDS OF ALL ABILITIES
BACKGROUND: According to the World Report on Disability, over one billion people, or 15% of the world’s population, live with some form of disability. Of these, between 110 and 190 million have significant difficulties in functioning. Children with disabilities are one of the most excluded groups of children. Discrimination arises due to lack of understanding and knowledge of its causes and implications, fear of difference, fear of contagion or contamination, or negative religious or cultural views. Added to that is poverty, social isolation, humanitarian emergencies, lack of services and support, and a hostile and inaccessible environment. Children with disabilities tend to be defined and judged by what they lack rather than what they have, and their exclusion serves to render them uniquely vulnerable, denying them respect for their dignity, their individuality, and even their right to life itself.
WHAT IS KIDS CREW?: Hailey Scheinman started Kids Crew initially in her local community and was focused on teaching kids about all types of special needs/disorders including epilepsy. The program caught the eye of the then President and CEO of the Epilepsy Foundation and he asked Hailey to create an Epilepsy Foundation Kids Crew focused on epilepsy. The program is open to all kids 14 and under either with or without epilepsy. The program was created with three areas in mind: creating epilepsy awareness to help educate family, friends, and the community; sharing stories so that others can learn from experiences; and participating in Lemonade for Livy, the Purple Pumpkin Project, and local walks. They encourage imagination and creativity and know kids have unique gifts that can be used to give back to others. They encourage each child to come up with ideas that can impact their community based on what they have experienced. In doing so, it allows for teamwork, helps each child learn more about epilepsy, and gives them confidence.
POTENTIAL EPILEPSY BREAKTHROUGH: There are three million people with epilepsy in the U.S., and just over half of those can control their seizures with a single drug or combination of drugs. However, about 40% of epileptic patients have drug-resistant epilepsy, therefore, needing surgery if they’re candidates. These patients have significantly lower quality of life, says Johns Hopkins neurologist and epilepsy specialist Gregory Krauss, with a significantly higher risk of impaired social interactions, employment issues, falls, and even unexpected death. In a recent clinical trial led by Krauss, a new drug known as cenobamate showed promise for patients with treatment-resistant focal onset seizures. To qualify for the trial, a patient needs to have a history of eight or more seizures during the past eight weeks. Their results showed dramatic effects for the two highest-dose groups in particular. Those taking either the 200 mg or 400 mg tablet had 55% fewer seizures overall, with 21% stopping seizures altogether.
* For More Information, Contact:
Jonathan Scheinman, Sr. Dir. Community Engagement/Epilepsy Foundation
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