Before he was even born, baby Dean had a perinatal ischemic stroke. When loving parents Lauren and Ryan learned that their as-yet-unborn son had already had a stroke, they were devastated and immediately began learning all they could about his situation. While conducting their research, they discovered the website of non-profit organization Children’s Hemiplegia and Stroke Association (CHASA), an internationally-recognized authority on the needs of children who have hemiplegic cerebral palsy.
One day, Mussia Federman was playing in the park when she saw another girl there who she thought looked lonely. The girl was sitting in a wheelchair and couldn’t play on the swings or go down the slide. Mussia says, “I had so much fun playing store with her. When my mother told me about how important it is to include others, I started thinking about what else I could do.” She began talking to her class at school about the value of including and welcoming all children, and she also began hanging out with the Friendship Circle of Miami Beach and North Dade (FCMiami), a group of like-minded folks whose motto is, “Be a friend.”
We’re willing to bet that you haven’t given much thought to your body’s powerful ion channels lately. Yet, even when you ignore them, they still perform a critical role in your body to keep you functioning and playing the way you do. Sadly, a very rare and as-yet-inexplicable mutation in the SCN8A gene that encodes one of those super-important ion channels can cause us to have seizures, developmental delays, and an overall medically fragile state.
Imagine being a new mother. Now imagine being a new mother of twins, both of whom have autism, then founding a non-profit support group for other families of children with autism. Feel tired yet? Fortunately, Nikki Busalacchi, founder of On the Spectrum Autism Support Group, didn’t give in.
When you visit Kids Enjoy Exercise Now, LA (KEEN LA)’s website you’ll see one of the organization’s participants wearing a t-shirt that reads, “The best days are KEEN days.” What are KEEN days? We’re glad you asked. On KEEN days, the non-profit organization Kids Enjoy Exercise Now, LA (KEEN Los Angeles chapter) hosts free events for community members to come together to dance, play, and engage in other fun, physical activities. These days truly are the best days, because the kids typically picked first for teams and those who are often overlooked by their peers show up and play together to their hearts’ content!
Mighty Matthew Cech is a superhero, who “isn't afraid of anything and never gets tired.” He chooses to face his diagnosis (Mito disease complex l and lll and CIPO) with strength and bravery, just like the masked defenders in our favorite comic books.
But even a superhero needs a sidekick sometimes. Four and a half years ago, Mighty Matthew received his first Binkeez blanket. He declared that the soft bumps sewn into the Binkeez fabric were “magic bumps” and found great comfort in their touch. To this day, Mighty Matthew brings one of his three Binkeez blankets to doctor’s appointments, ER visits, hospital stays, and even into the OR.
Fox and Trove’s mission statement reads, bolded and in all caps, “WE ARE ON A MISSION TO CHANGE THE WORLD OUR KIDS GROW UP IN BY TEACHING THEM HOW TO BE KIND AND BRAVE.” Just that tiny little goal. To change the world in which our kids grow up. Not at all daunting. Co-founders Jami Schaer and Laura Wood believe they can achieve it, and they are making changing the world easy, engaging, and fun!
Six-year-old Emerson is a fun, feisty, funny, slightly sassy, smiley, recently-promoted-from-kindergarten, girl who likes Trolls, swimming, reading, and riding horses, and also happens to have cerebral palsy and epilepsy. Emerson actively crushes assumptions about what a little girl in a wheelchair who is non-verbal is like. She even grabbed Senator Kamala Harris’s attention when Sen. Harris was fighting to save the ACA and Medi-Cal.
If you love a kiddo with Down syndrome, you may be able to relate to the fear many soon-to-be parents feel when their doctors tell them their baby will be born with an extra chromosome and that that 21st chromosome will mean their kid may face a whole host of medical challenges during their lifetime. Fast forward a bit, though, and lots of those same parents find that the fear has been replaced by joy.
Little Rosemary loves the homemade crackers her parents bake, though maybe not just for the reasons you’d expect. They are actually part of the strict keto diet (short for “ketogenic”) that ended her epileptic seizures.