'Heart mom' brings national quilt to Sandwich
By Linda Girardi
SPECIAL TO THE BEACON NEWS

Son lost battle: International effort promotes heart-defect awareness

SANDWICH Cathy Schweinberg is a "heart mom." With scores of others at her side, Schweinberg is passionately promoting greater public awareness of a congenital heart defect which shortened the life of her teen-age son, Jason. "It's been a hard day, but I have been keeping myself busy," the Sandwich mother said on the eight-month anniversary of her eldest child's death. Jason had a promising future, lots of friends and a special love for his parents and younger siblings, Rebecca, Hailey and James. Together with her husband, Steve, the Schweinberg family has been instrumental in coordinating the first-ever Midwest Congenital Heart Defect Awareness Quilt Show. Saturday, the CHD Awareness Quilt Council will host the show, featuring nine quilts that are part of an international project. The show, open to the public, will be at Sandwich High School from 1 to 3 p.m.

The show is in honor of Jason, who would have been a senior this year. After numerous heart procedures and surgeries, beginning from the time of his birth when his parents were told he had a rare heart condition Jason lost his battle last August at age 17. "The last year of his life, he struggled and suffered needlessly," his mother said. "His life was a constant struggle, in part because of the lack of research on his condition, which would have enabled his doctors to identify what was happening. "Jason had prior surgery, but his cardiologist didn't recognize the problem, and he was developing other complications," Schweinberg said, in explaining the final months of her son's life. After his health continued to decline, Jason's parents took him to the Mayo Clinic in Rochester, Minn., for tests in July. It was discovered that he was in right-sided failure. Jason had heart surgery. In a week's time, he had five more surgeries and finally, then, was listed as an emergency heart-transplant patient. Sadly, his body was too weak to accept his new heart. Through it all, Jason had a true appreciation for life, a genuine sense of humor that kept friends and family laughing, and he never complained. "Jason was a big believer. He never complained about his condition," Schweinberg said. "Jason was concerned there wasn't enough research surrounding his particular defect. He felt people just didn't understand what he was going through."

"Heart families believe part of the answer lies in greater scientific research and improved quality of care for children and adults dealing with CHD." Today, Schweinberg said she is determined to spread the awareness of congenital heart defects to motivate researchers to do more and save lives. "It's what Jason wanted," she said.

The CHD Awareness Quilt project started two years ago as the dream of Gabrielle Harlow of Maryland to promote awareness of CHD, while honoring the strength, courage and commitment of all those born with a heart condition, as well as their families. There are 717 names of people afflicted with CHD that are included in the quilt project. Forty-seven states and 11 countries are represented. The count continues to grow daily. Each quilt is constructed of 42 blocks, with each block honoring someone born with a congenital heart defect.

"Heart families" from Illinois and surrounding states are expected to attend the Sandwich quilt show. Schweinberg's involvement began last summer with the making of her own son's heart block. Jason picked his own fabric and symbol, an eagle. "The eagle represented freedom and peace," she said. "He related it to his own life." (View Jason's Quilt Block)

Saturday's show will be the first time his family will see Jason's heart block in a quilt. "It will be an emotional day," Schweinberg said. Her involvement in the project quickly progressed. She began making heart blocks for other children and became coordinator of the show. "I cannot tell you how much support we have gotten from this small town of Sandwich," she said. "I could not have gotten through it without this town."

"I wanted to share one of the most touching parts of the show to me....the entire girls softball team(Jasons age group) came into the show after finishing a game. They all immediately went and huddled around Jasons storyboard. Alot were crying, and they all came to me after and said how much they learned. None of them even knew that he had a heart condition..they hadnt even known why he died...they thanked me for helping them to understand.They always thought that when Jason was sleeping in class that he just hated school...now they know why. Not only did they read Jasons board..they read them all..that's what I wanted..to educate the kids..that made my entire day so meaningful...I just wanted to share that."
Cathy Schweinberg

Cathy attached the names of those who have lost their battle with CHD to balloons.
A balloon release was held in honor of those angels.

Jason's Mom and Dad (Cathy and Steve)
Cathy Schweinberg first got involved with the CHD Awareness Quilt Project when she made her son Jason's quilt block. Jason had a love for Eagles and picked out his own fabric. After Jason lost his battle with CHD at the age of 17, Cathy felt the need to support others living with CHD's. Cathy started sewing blocks for other children but still felt the need to do more. She coordinated the first CHD Quilt Project Open House featuring 9 quilts on April 20, 2002 in Sandwich Illinois. Cathy is now the Special Events Coordinator for the CHD Awareness Quilt Project and continues to sew quilt blocks for others. She is determined to spread awareness of CHD and honor the strength of the families.

Jason Schweinberg's quilt block is in quilt #4. The scripture from Isaiah was added to his block by the CHD Awareness Quilt Council members after learning of Jason's passing. Isaiah 40,31: They that hope in the Lord will renew their strength, they will soar as with eagles' wings; They will run and not grow weary, walk and not grow faint. Jason will always be remembered as he continues to touch lives while Soaring with the Eagles.

Don't forget to Sign the Schweinberg's Guest Book!

Jason's Home Page

Jason's Memorial Page

The Congenital Heart Defect Awareness Quilt Project