Some people take a child’s diagnosis and spend their days struggling to deal with it. Others somehow find their way, and the time, to move past the diagnosis and become an advocate for children like theirs. Or, in the case of one young hearing-impaired teen, they become an advocate for themselves and others like them. Here are four local heroes who have turned tough circumstances into opportunities to help others.
Finding out your child has special needs can be devastating. But some local heroes have found ways to turn their children’s challenges into an opportunity to help others.
The first thing you notice about 9-year-old Ainsley Evans is herinfectious grin. Her hand covers her mouth as she tries to containher joy, but it’s too late-Ainsley is laughing and gesturing to theroom full of friends around her.
The first thing you notice about Ainsley’s mom, Paula Evans, isher fierce determination to find a cure for her daughter, who hasAngelman Syndrome.
Ainsley was 10 months old when she was diagnosed with thedebilitating disorder, which is so rare few researchers are willingto search for treatment or a cure.
“It just never sat well with me that there was no hope for thisbaby of mine,” Paula says. “I just never really accepted that therewould never be anything that could help her.”
So Paula, a former realtor who admits she knows nothing aboutscience, started some research of her own. What she found was thatmost researchers steered clear of studying Angelman because of alack of funding.
But in 2007, researcher Dr. Ed Weeber was able to cure it in amouse. Neuroscience was exploding at that time, and Paula knew thetiming was right to push for a cure for children like Ainsley.
Paula created FAST (Foundation for Angelman Syndrome Therapies)along with other parents of children who had the disorder. Shecontacted Weeber, who told her the only way funding would comethrough for the obscure disease was if a celebrity’s child had itand brought publicity to the research.
“About a week later, (actor) Colin Farrell came out with sayinghis child had Angelman Syndrome,” Paula says.
Paula connected with Farrell and with Weeber and the work began.Between fundraising efforts and winning a contest for charities,FAST has raised enough to begin clinical trials.
But Paula continues to push for more research, and won’t stopuntil a cure is found for all children with this disease.
“There’s no doubt this is curable. I dedicate my life tothis because my child suffers from this disorder,” Paula says.”Everything I do is for all the children, but I have a horse inthis race and yes, I do believe (a cure) will be in time forAinsley and we’re going to have multiple therapeutics while we’reworking towards the ultimate goal.”
For more information on FAST or Angelman Syndrome, visitcureangelman.com.
Paula Evans of Darien, co-founder of FAST (Foundation for Angelman Syndrome Therapies)
Seventh-grader Eliza Peters has two passions: sports and her efforts to provide hearing aids to children who otherwise couldn’t afford them. The two passions collided last year when Eliza’s dad John wrote to Sarah Spain of ESPN and told Sarah she was Eliza’s idol. Eliza, who is hearing impaired, hopes to become a sports broadcaster herself someday.
What began as an unlikely friendship between a celebrity broadcaster and a young girl has turned into a foundation the two work on together, called Hear the Cheers! They connected with Anixter Center and the Chicago Hearing Society and began fundraising for money for hearing aids.
Eliza raffled Cubs tickets at Geneva High School and spoke to the local Lions Club about Hear the Cheers! Spain tweeted about the fundraising on ESPN, and those tweets were picked up by NBA and WNBA stars and deaf actress Marlee Matlin. Eliza spent the day at Halas Hall with Brian McCaskey, who’s on the Hear Strong board and also connected with some Chicago Blackhawks, who helped publicize her efforts.
“The first night we went live, John watched the money go up (on the Chicago Hearing Society website),” says Eliza’s mom Amber. “In a few minutes it was up to $5,000. By the next day, I said we can do $10,000 and in 24 hours, we’d raised about $15,000.” The effort eventually netted more than $18,000, all devoted to buying hearing aids for children.
“At the end, it was amazing the people who have given money who didn’t even know us,” says Amber. “They just had a good heart.”
The Hear Strong Foundation honored Eliza as a Strong Champion.
She will begin a second round of fundraising efforts this month (see chicagohearingsociety.org for more information), but that hasn’t stopped her from playing basketball on her school team and dancing. Although she does admit, “sometimes when I have to go up to the foul line, I turn them (hearing aids) off so I don’t hear the noise.”
Eliza Peters, 13, of Geneva, started Hear the Cheers!, which raises money for hearing aids for children
Diane Mayer Christiansen believes in finding the silverlining.
That wasn’t always the case. The Glenview mother of Jackie, 12,struggled when her son was diagnosed with autism in second grade,immediately worrying about whether he would be able to makefriends, excel in school, even go to college.
“The first thing you do is focus on all the negative stuff,”Christiansen says. “You can really get caught up in that.”
But a year later, Christiansen decided it was time for a newperspective. She told herself that she needed to focus on thepositive things about her son’s diagnosis and celebrate what makeshim unique.
“We had to embrace the autism,” she says.
That unusual point of view turned into Christiansen’s firstbook, Jackie’s Journal, which she wrote with her son. The bookdiscussed some of the challenges Jackie faces on a daily basis,whether understanding social cues or having a meltdown due to asensory issue. And when they shared the book with his classmates,Christiansen says there was a very positive response as his peersrealized what was really going on with Jackie.
“I began to realize that there needed to be more awareness aboutwhat spectrum disorders really look like,” Christiansen says. “It’skind of my goal to get that word ‘autism’ out there.”
That realization-and her publisher’s excitement about the firstbook-led to SNUB Club and the Case of the Disappearing Donuts,Christiansen’s latest book for elementary readers.
SNUB, which stands for Special Needs Undercover Brigade, focuseson two main characters, Jackie and Cameron, both of whom are on theautism spectrum. But instead of focusing on the challenges ofautism, these characters are actually superheroes who use the”powers” from autism, such as Jackie’s photographic memory, tosolve crimes.
“My motivation comes from the idea that if kids learn aboutthings at an early age, they’re less likely to fear that,”Christiansen says. “These books were a great opportunity to getthat little message out there.”
She also sees it as a chance for Jackie, who has struggled withself-esteem issues as a result of his diagnosis, to tell his story.Mother and son have occasional book signings, including an upcomingevent at the Autism Family Center in Winnetka on March 11, wherethey share their story. For more information on the event click here.
“He has absolutely no fear,” Christiansen says. “I think he cando some great things in the world.”
Jackie’s Journal and SNUB Club and the Case of the DisappearingDonuts are both available on amazon.com.
Diane Mayer Christiansen of Glenview is an author hoping to educate others about autism
In the summer of 2011, Julie and Michael Tracy almost lost theirson.
John, who was diagnosed with autism at 2, became mentally ill inhigh school. The once “really bright, funny, articulate kid” proveddifficult to stabilize, and his parents weren’t sure he wouldrecover.
“It was a real game-changer for all of us,” Julie says.
John, who is now 22, currently lives at The Sonia ShankmanOrthogenic School in Chicago. But his parents know those mentalhealth problems aren’t isolated to their son. In fact, individualswho have autism are more likely to struggle with certain mentaldisorders. So Julie and Michael set out to change the situation forJohn and other young people like him.
That led to the creation of The Julie & Michael Tracy FamilyFoundation, whose purpose is to address the challenges facing youngadults with autism.
“We knew it would help John,” Julie Tracy says. “But we can’tjust help John. We have to create strong systems that will supportour kids throughout their lifetimes.”
One of the organization’s initiatives is called Project 1212,which plans to create residences for three to four young adultswith autism. The first residence, scheduled to open sometime thisyear, is located in Chicago’s West Loop. The space will also beused to reach out to the surrounding community through classes,meal times, and opportunities to simply “hang out.”
“It’s really more selfish than it sounds. In order to help John,we have to create systems that currently don’t exist,” Juliesays.
The Tracy Foundation also has several other projects, such asthe Community Garden and a “Not Enough Cooks in the Kitchen”program that teaches cooking skills. They’re also looking intostarting a micro-business in Chicago’s Taylor Street area.
“What we’d really like to do is make Chicago the mostautism-friendly place in the United States,” Julie says.
In order to do that, she relies on her own background as aspeech pathologist, her husband’s “big picture” perspective, andthe couple’s concern about their son’s future as he ages out of thesystem.
“We literally take things one day at a time,” she says. “If youwant to know the future, you need to invent it yourself. Webelieve in doing things, even if they don’t turn outperfectly.”
For more information on the Foundation or to contact the Tracys,visit jmtf.org.
Julie and Michael Tracy of Glenview created The Julie &Michael Tracy Family Foundation for young adults with autism