Superhero Project helps kids find inner strength – cleveland.com

CLEVELAND, Ohio The superhero of East 330th Street is motoring around her lair, spinning this way and that, zipping forward, abruptly changing directions. Her sidekick, Fonzie the pug, is busy darting out of her way as her brother and sister feed off her energy.

The superhero has not yet imagined the outfit she will wear when she transforms from suburban kindergartener to guardian of good, nor has she considered how her powers will manifest.

This is her genesis story. Spiderman was bitten by a radioactive spider. Superman was sent to Earth from a doomed planet Krypton.

And 5-year-old Clare Julian will soon be visited by superhero maker Lisa Kollins.

Kollins launched the Superhero Project, which she runs in her spare time, in 2016 and has created nearly 350 larger-than-life alter egos since then. She interviews sick kids to learn about their inner superhero, then connects with professional artists across the world to bring the character to life.

Clare has Nemaline myopathy, a rare genetic disorder that causes muscle weakness throughout her body. She cannot speak, cannot walk and cannot swallow. Nurses are with her 16-hours a day, her parents cover the rest.

Still, Clare possesses immense powers. Chief among them are her strength, her resilience and her ability to adapt to adversity. Her vehicle is a motorized wheelchair and her lair a too-tight bungalow in Wickliffe covers less than 1,000 square feet.

A colorful bandanna covers a trachea tube as it connects to a port in Clares throat. When she needs suction, which is often, she rolls up to her mom, Erin, and tells her so. Her words are more like guttural sounds, but mom knows what each sound means. Erin flicks on a small suction machine, places a straw into Clares mouth, and its done in a snap, as routine as tying shoelaces.

Today is superhero day for Clare. Kollins sits on the couch to talk with Clare and Erin and Clares dad, Bill; her sister, Regan, 7; and brother, Ian, 9.

Kollins seeks insights into Clares personality, and wants to hear how she envisions her inner superhero. Shell share the information with freelance artist Katie Scalmato of Brunswick Hills.

Clares family offers: Funny smart. sassy crazy empathetic.

Kollins takes meticulous notes as Erin suggests the hero be named Clare Bear Strong, a name the family uses on social media for Clare. The superhero of East 330th Street agrees.

With a monotone communication program on her iPad, Clare says she wants Clare Bear Strong to have blue hair and a light saber and a flying wheelchair with flames blasting out the back. And shell have tools that can knock down barriers for people in wheelchairs.

There was a curb a couple of blocks down, Erin says, noting that it was at a crosswalk and hard for Clares chair to mount. We called the city and, long story short, they fixed it and made it more accessible. I told her we should call it Clares Corner, and she said, no, its for everybody.

Clare Bear Strong will be an avenger for accessibility.

The projects beginnings

The Superhero Project began when Kollins was working as a counselor at a weeklong session of Camp Sunrise near Cincinnati in 2015. She interviewed all the children, who are affect by HIV and AIDS, when the camp began, arranged for artists to draw quick sketches, and presented the children with depictions of their superhero characters in a slide show at the end of the camp.

Within 20 seconds, I was weeping, half the counselors were crying, and the kids were just going nuts, she said. I had stumbled into something more powerful than I could imagine.

Too powerful to be a one-time thing.

So Kollins spent a year developing a plan for her Superhero Project and launched her Web site, sidekicksohio.org, in 2016.

She works with children from local hospitals and, using Skype for interviews, from all over the world. Artist partners are all over the world, too. And she does it all in her spare time. By day, Kollins is administrator of the Schubert Center for Child Studies at Case Western Reserve University.

What impresses her most about the children is their selflessness.

They almost never say what their illness is, what their disability is, what theyre going through, she said. And they rarely have a superhero power that directly benefits them. Most of the time its about helping other people, spreading laughter, spreading joy.

C.K. fights CP

C.K. Leek, 9, wants to cure other children who have cerebral palsy like he does.

When Kollins enters C.K.s house in a western Cleveland suburb and joins him in the kitchen for a cup of hot cider, the boy releases the grip on his walker and takes a seat on the floor.

Kollins plops down next to him and asks what makes him super. Shell share her notes with artist Anthony Scalmato, department chair of animation at the Cleveland Institute of Art and husband of the artist who will create Clare Bear Strong.

C.K.s adoptive mom, Natalie, and dad, James they say he adopted them try to offer a suggestion or two, but C.K. is having none of that. This is his story to tell.

Im kind, loving, caring, gentle and respectful, he says.

All true. Hes also mischievous.

Im 28-years-old and Im married, he tells Kollins, eyes wide.

He is, of course, neither.

Clearly, a colorful imagination and wry sense of humor are among his superpowers. He says he wants to be known as Captain Rainbow and he wants rainbow skin and rainbow hair and a rainbow hideaway.

I dont have CP in my imagination, he tells Kollins, using the initials for cerebral palsy.

He tells her he wants to cure other kids and will need a special gadget to do it: A Secret Schwaduper! It can shine a light into the kids body so I can take out the CP and oxidize it and kill it.

Fulfillment and sadness

Kollins said her work is rewarding, but there are times when its heartbreaking.

The hardest part is knowing that a number of families have lost the children that I have worked with, she said. More than a dozen she helped immortalized as superheroes have died.

One of them, Tabatha Toothman of Ravenna, died in September at age 14 after battling kidney cancer. She wanted to be known as The Healer. Her superpower was healing other kids.

She loved that poster, said her mom, Christina, who attended an opening Feb. 20th at the Trudy Weisenberger Gallery in University Hospitals main building, where 40 of the large Superhero Project posters are now on display.

It was such a nice distraction for her, to think about this, instead of just waiting in bed for the next procedure, said her grandmother, Janet Sampson.

A nemesis returns

Ali Rieman was a workout warrior when she was diagnosed with acute myeloid leukemia four years ago when she was 18. Shes had two bone marrow transplants and is still working back to full strength.

Kollins visited her in Rainbow Babies and Childrens Hospital in 2018, just after the second transplant.

At the height of weakness and vulnerability, Ali Strong was born, her arms chiseled, her smiling beaming.

I asked she have a big smile on her face because I wanted her to radiate positivity, she said.

Danny Ducker, a Netflix storyboard artist in Los Angeles, drew her with the white cape she received as a survivor at a Leukemia and Lymphoma Society fundraiser.

Why Ali Strong?

I saw the pain my family felt watching me go through it, she said. I just had this sense that I needed to be strong for everyone around me.

The alter egos offer her and others a chance to see themselves overcoming the illness that often defines them.

They may feel weak or be in pain, she said, but they can visualize themselves being strong and helping other people, and it makes them want to keep going.

Ali Strong made Ali strong.

While my real body was consumed by pain, she said, my inner hero remained unstoppable.

To reach the author, send email to mmcintyre@plaind.com. On Twitter, @MichaelMcIntyre

Previous stories by Michael K. McIntyre:

Car mechanic shifts gears, becomes a doctor at age 47 and helps address shortage of black doctors

Adoptee sent away for birth certificate, stunned by discovery: I think I know him

Poetry is her salvation, saving kids is her mission: Honey Bell-Beys rise from poverty to poet laureate

Firefighters lesson saved two lives before his own death

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Superhero Project helps kids find inner strength - cleveland.com