Accidental Activists 07030
Turning a terrible loss into a force for good
by Arlene Phalon Baldassari
Jun 15, 2017 | 2625 views | 0 0 comments | 353 353 recommendations | email to a friend | print
Madison Rose Cohen
Madison Rose Cohen
Photos courtesy of Matt and Stephanie Cohen
view slideshow (3 images)

Maybe you heard last summer about Madison Rose, the infant who needed a heart transplant, from your Hoboken neighbor. You probably read the articles in the local press, including on the front page of The Hoboken Reporter, and watched the interviews with her parents, Stephanie and Matt Cohen, on Fox 5 News and Pix 11 News. Their compelling story told of how, at her 20-week ultrasound, they were given Madison’s diagnosis of Hypoplastic Right Heart Syndrome (HRHS), a congenital heart defect, and how, soon after her birth, she was listed for transplant. It may have been on social media, where word spread quickly about the GoFundMe page, set up by Stephanie’s sister, Tiffany, to help with expenses, and which raised $58,839, far surpassing its initial $25,000 goal. Or perhaps you participated in one of the many fundraisers (see sidebar) around town, as so many local businesses tried to help, and Madison’s parents waited for word of a donor heart.

But Madison did not receive the heart she needed, and on Sept. 8, 2016, after two months in the Neonatal Intensive Care Unit, she passed away, never having been able to leave the hospital. Her parents were devastated. After her funeral service at St. Ann Roman Catholic Church in Hoboken, they were left determined to reassess, regroup, and figure out what to do next. One month later, in the midst of their grief, they assembled a team of 30 to participate in the New York Congenital Heart Walk. The Madison Strong Team finished in the top 10 fundraisers. “While we were still grieving, it felt good to help others, and it was a way to honor Madison’s memory,” Stephanie recalls.

Close friends introduced her to Ady Dorsett, a former Hoboken resident whose son Hayden had passed away five years earlier from Hypoplastic Left Heart Syndrome, which occurs in one out of every 4,000 births. (Madison’s HRHS was even rarer.) There was an immediate bond, and they became close friends. Ady had set up a foundation, Hayden’s Heart, which raised awareness and funds for Congenital Heart Defects (CHD) and distributes care packages to CHD families in the hospital. In February, Hayden’s Heart included donations in Madison’s honor to their event, the Shea Strong Heart Fundraiser for the Babies Heart Fund at Columbia University Medical Center to support funding for innovative research and transitional care programs.

Meanwhile, the community continued its support. In January, Cyclebar held a class, Ride for Madison & CHD Awareness, in its West Studio, and in March held an offsite Ride for Madison & Hayden by transporting 50 bikes to the Pilsener Haus, with all proceeds going to Hayden’s Heart Foundation. Other doors began to open, as Stephanie and Matt’s efforts brought new attention to CHD, and as Mayor Dawn Zimmer said in her State of the City address, “Stephanie and Matt’s mission to keep Madison’s memory alive serves as an inspiration.” Their biggest event yet joined forces again with Hayden’s Heart for a Golf Outing at Preakness Valley Golf Course in Wayne, appropriately titled, HeartStrong. Proceeds benefitted Shea Oldenburger, a toddler from Washington Township who is fighting a multitude of congenital heart defects. It took place on Friday, June 9 (see haydensheart.org).

Soon, Stephanie and Matt will launch their own nonprofit, which will be called The Madison Rose Heart Project, with the mission: “To raise awareness, support others and honor Madison.”  Their first effort will partner with Hoboken’s Little Words Project to distribute inspirational bracelets to moms of children with CHD, to give them a tangible reminder that they are not alone. While nothing can assuage their loss, the Cohens have found solace and hope in trying to give back. “It’s given me purpose,” Stephanie says. “And,” Matt adds, “she can still be Madison’s Mom.”

For more updates, go to the Miracles for Madison GoFundMe page, gofundme.com/2fh63ng or follow the Little Hoboken Blog, littlehobokenblog.com, where Stephanie has been contributing as Heart Mom.

SIDEBAR

Stephanie and Matt would like to thank the many local businesses that have stepped up to help. Among them:

Local Barre conducted a class at Maxwell Place Park.

Aaraa hosted a lemonade stand.

Tony Boloney’s Hoboken offered Madison Pizza sales in August 2016.

Hoboken Girl held an event in which all raffle sales were donated.

Pier 13 hosted a fundraiser.

Anthony Davids with Via Nero donated 10 percent of dinners one night.

Little Hoboken held an event at House of Que.

McSwiggan’s held a Hoboken Happy Hour.

Jaret’s Stuffed Cupcakes held an event.

Madison Strong bracelet sales were held around town.

Cyclebar held a class and a ride, supplying 50 bikes.

 

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