One of the finest traits shared by ICO’s people is a desire to give back. The spirit of generosity, especially toward younger generations, is strong within our graduates. Several kind-hearted individuals have made children’s charity a permanent part of their lives. All were inspired by major life events- some happy, some tragic- to help kids survive and thrive.
Here are just three of the many children’s initiatives created or backed by the ICO community. We thank them for their compassionate work. Children are our future, and organizations like these promise a better world:
Answers for Emmett
When Jeffrey Frank, OD ’03, and Kristy Marczewski-Frank, OD ’04, describe their son Emmett, it is clear he was a unique little boy. Both parents have dark hair and eyes; Emmett was born with pale, blonde hair and blue eyes. “He was such a happy-go-lucky personality,” says Dr. Frank. “If you ever see him in a picture, he’s either smiling or he’s touching someone else… he was such a great little boy.”
Emmett was 16 months old when he passed away in his sleep. There were no signs or symptoms. Sudden Unexplained Death in Childhood (SUDC) affects 1 in 100,000 children. The condition differs from SIDS in that patients are over a year old. They can walk, talk, and function normally. As of today, there are no commonalities between SUDC children- but families are trying to learn more.
Drs. Frank and Marczewski-Frank founded Answers for Emmett in hopes of settling some of their many questions. The organization is taking a “three-pronged approach” alongside the SUDC Foundation. Their goals are to spread awareness, create a patient registry, and raise funds.
In addition to providing social workers and counselors, The SUDC Foundation helps parents find one another. There are message boards and Skype sessions wherein specific populations can connect- fathers, mothers, even expectant parents. “I still talk to a guy who now lives in Florida about his son,” says Dr. Frank.
The SUDC Foundation is “starting a database with major institutions like Stanford, Duke, New York University, and Mayo,” says Dr. Frank. These health institutions are taking steps, such as patient genome mapping, to “determine if there are any genetic variants for the cause for why Emmett died.” Scientists are unsure if SUDC is cardiovascular, neurological, or something else. A registry like this one brings everyone closer to discovery.
“If you ever see him in a picture, he’s either smiling or he’s touching someone else… he was such a great little boy.”
– Jeffrey Frank, OD ’03
Even with so much progress, problems in the US health system remain. When Emmett died, his parents had to go to court to get his blood banked. The coroner who performed Emmett’s autopsy had no previous experience with SUDC. Thankfully, with the help of the SUDC Foundation, the Obama administration signed a bill demanding protocols for SUDC kids.
Answers for Emmett helps raise funds for the SUDC Foundation. “Less than a year after Emmett died, we had our first race,” says Dr. Frank. The family set a goal of 500 runners for a date in May- the same month as Emmett’s birthday. Somewhere between 650 and 700 participants showed up in Geneva, Illinois. They raised $70,000. A second run took place in Batavia, IL, the next year.
For 2017, Answers for Emmett is going bigger. A patient of Dr. Frank’s is putting together a major concert event. The organization is hoping to draw 10,000 people to River Edge Park in Aurora, IL, for an evening of music in May. Attendees will be able to purchase Chinese lanterns to float down the river at the end of the show.
For those unable to attend the concert, there are many more ways to help Answers for Emmett. A social media campaign called #Cartwheels4SUDC will be launching soon. Donations are also welcomed at www.Answers4SUDC.com. “My goal is to raise $100,000,” says Dr. Frank. “I actually think we can get there.”
World Pediatric Project
Eric Johnson, OD ’11, proposed to India Blevins on a mountaintop in Utah. They knew their life would be filled with a love of children. They have four kids between them, and India is a flight nurse for St. Louis Children’s Hospital. Instead of registering for traditional wedding gifts, the couple chose to raise money for the World Pediatric Project.
The couple set a goal to sponsor one WPP child- $5,000. They put up a donation website and started spreading the word on Facebook. Money began coming in. “The majority of it was local,” says Dr. Johnson. “That’s the best gift we could have gotten.”
When it came time to choose a child to help, an incredible coincidence occurred. Dr. Johnson explains, “I was literally lying in bed and India came downstairs and said, ‘I picked the kid today. Her name is Genesis. She’s from Honduras and has Tetralogy of Fallot*.’ My jaw just dropped because I had a sister who died from Tetralogy of Fallot… I had never told her about it. She had no idea.’”
They raised $5,000 before the wedding. So, they upped their goal to $10,000. Melissa, their friend in the WPP “thought it was a huge deal,” says Dr. Johnson. “She kind of blew it up.” Melissa contacted media outlets. ABC broadcasted the story nationally, including in Los Angeles and Houston. Clock 2 News Washington even came to the wedding reception. After the wedding, the fundraising goal was raised to $15,000.
Dr. Johnson and India chose a second child with Tetralogy of Fallot, Rodrigo. The money raised for Genesis and Rodrigo included
not only surgery, but also flights to and from the United States plus accommodations for the families. Many WPP surgeries are done pro bono, allowing more money to go toward transport. Says Dr. Johnson, “there is no way they can do these open heart surgeries [in third world countries.] They don’t have the technology that these major hospitals have.”
Genesis and Rodrigo have both successfully undergone their surgeries. “Two down, one to go!” Dr. Johnson exclaims. The couple is still collecting donations for the World Pediatric Project. They agree that “being generous always gives back.”
To help a child receive a life-saving procedure from the WPP, visit Dr. Johnson’s Crowdrise page: www.crowdrise.com/EricandIndia. The WPP will be hosting their 3rd annual
“Rock ‘n’ Heal” event in St. Louis on June 2nd. They also accept direct donations: www.worldpediatricproject.org.
“My jaw just dropped because I had a sister who died from Tetralogy of Fallot… I had never told her about it. She had no idea.’”
– Eric Johnson, OD ’11
Joe Kowalisyn is the Information Technology Manager at ICO. Two years ago, at 31 weeks, his wife Amy gave birth to twins Alex and Emma. Doctors discovered that Emma had suffered a stroke in utero. Amy explains, “We made the decision to have Emma airlifted to Riley’s Children’s Hospital.” For 3 weeks, the Kowalisyns drove back and forth between Valparaiso and Indianapolis, Indiana, to be with both babies. At 23 days old, Emma passed away.
While the twins were in separate hospitals, friends and organizations kept sending care packages. The Kowalisyns realized this feeling of care and support could be spread to others. Amy explains that, when Emma died, “in lieu of flowers, we asked people to bring items that we could put into care packages to deliver to the local NICU.” What started as a one-time ask turned into an organization called Emma’s Footprints.**
Today, Emma’s Footprints delivers anywhere from 10 to 200 care packages a month to 6 different hospitals. The Kowalisyns have expanded the charity’s goals from care packages into bereavement care and counseling. “We provide a lot of support and awareness to families that have lost an infant,” Amy says. Monetary donations to Emma’s Footprints help with everything from scholarships for bereavement retreats to the purchasing of CuddleCots.
ICO was one of the top supporters for an Emma’s Footprints golf event in 2015. “Different individuals in the company have been big contributors,” says Joe. “[ICO,] in general, has been so kind to our family and so supportive of our mission.” He says he feels a “sense of family” within the institution. “That’s one of the big reasons why I love working here.”
Emma’s brother, Alexander Michael, is now two years old. “Alex has been our saving grace, keeping our sanity,” says Joe. The Kowalisyns are expecting twins this summer.
Even with babies on the way, Joe and Amy have kept Emma’s Footprints as active as ever. They are constantly collecting clean diapers, clothing, stationery, toiletries, blankets, and snacks. They include gift cards to clothing stores and restaurants in their care packages, and rely on church groups and volunteers to help assemble and deliver.
To help Emma’s Footprints build care packages for hospitals, check out their Amazon Wishlist via Facebook*. They also accept monetary donations at www.legacyfdn.org. “You can find your way again,” Amy says to parents suffering loss. “You may not be the person that you were before, but you find a new way of looking at life. There is a way to find joy.”
“[ICO,] in general, has been so kind to our family and so supportive of our mission.”
– Joe Kowalisyn
*This piece originally used an incorrect term to describe Genesis and Rodrigo from the World Pediatric Project. Their heart condition is not called tetralogy of flow, but Tetralogy of Fallot. We apologize for this error.
**If you search for Emma’s Footprints on Facebook, you may find a strikingly similar organization with the same name. This group also lost an infant named Emma; both families know and support each other. The name is a coincidence.