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Bedford Boy Needs Your Help To Receive Heart Transplant
Updated November 2, 2015 6:48 PM
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Cohen Austin.JPG
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Cohen Austin and his family flying to Disney World as part of a Make-A-Wish gift. Cohen, 3 has a rare genetic disease and needs a heart transplant.

(BEDFORD) - Volunteers are needed to assist a Bedford family to raise funds for a heart transplant for 4-year-old Cohen Austin.

Chris and Ashley Austin got the news that their son had a rare genetic disorder when Cohen was 2. He suffers from arthrogryposis Freeman-Sheldon Syndrome. The couple with their two other children learned to deal with the troubles and remained positive.

Then one morning in April 2014 they woke to find 4-year-old Cohen's lips and fingertips blue. He was taken to the doctor and tests showed Cohen had an enlarged heart. A pediatric cardiologist at Peyton Manning Children's Hospital told them Cohen has restrictive cardiomyopathy, the rarest of the five types.

Cohen is on medication to help with his pulmonary edema and has had a heart catheterization and test to measure lung pressure. Currently, his lung pressure reading is a 4. If that pressure increases to 6 or higher Cohen would need a Berlin Heart. A Berlin Heart is a tiny heart pump that maintains blood flow in babies and small children in heart failure.

Cohen's next test is in December. If Cohen gets a Berlin Heart, he will stay at Riley until he gets a new heart.

Once a heart becomes available Cohen has three hours to get to the hospital.

A heart transplant costs an estimated $1.6 million. Even with health insurance, families incur high out-of-pocket costs for other expenses related to the transplant.

For that reason, the Austins are working with Children's Organ Transplant Association to help raise money for transplant-related expenses. COTA, based in Bloomington, is a national charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses. The organization's priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. One hundred percent of all funds raised are used for patients' transplant-related expenses.

The goal is to raise $50,000. If you would like to help the Austins by making a financial gift, visit

Volunteers are needed to assist with fundraising activities that will help with transplant-related expenses.

Individuals and groups interested in more information can contact Community Coordinator Dana Haddan at (812) 508-4805 or

Donations may be mailed to the Children's Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks or money orders should be made payable to COTA, with "In Honor of Cohen A." written on the memo line of the check. Secure credit card donations are also accepted online at

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