Birthday bash to honor babies, aid nonprofit

Madelyn’s Birthday Bash Fundraiser Feb. 9 to support Fred’s Footsteps

Above left: Erin Epstein and Jaclyn Deegan hold their baby Madelyn Joy at The Children’s Hospital of Philadelphia a week and a half before her passing. Above right: Madelyn Joy at Virtua Voorhess prior to becoming ill and being transferred to CHOP. (Special to the Sun)

There’s a first birthday party around the corner, and the whole community is invited.

Madelyn’s Birthday Bash Fundraiser on Feb. 9 will feature music and dancing, children’s activities, dinner, drinks and plenty of family-friendly fun. The event also will be a fundraiser for nonprofit Fred’s Footsteps, making it a perfect way to celebrate and honor the memory of birthday girl Madelyn Joy and her twin brother, Dylan Charles.

“I want this to be a celebration of life, and not just Madelyn’s life,” Erin Epstein said. “I want this to be a very special event, where anyone hurting, anyone at all, can celebrate life and have a really good time.”

It has been a long journey to the first birthday party for the Maple Shade couple’s daughter. Last summer, Epstein, who grew up in Cherry Hill and Marlton, and her wife, Jaclyn Deegan, were overjoyed when they found out they were expecting twins after battling infertility. The pregnancy, however, did not go as planned. At 12 weeks, they found out one of the babies had Down syndrome. At 18 weeks, Dylan’s water broke, and he did not survive.

Madelyn defied the odds and survived her brother’s delivery, remaining in utero another nine weeks. Through that period, the couple found out Madelyn was the baby with Down syndrome, confirmed when she was born on Feb. 2 at 27 weeks.

“She was doing fantastic,” Epstein said, noting her daughter did not appear to have any of the heart conditions some babies with Down syndrome face. At one month, Madelyn was breathing on her own. But a month later, she developed severe pulmonary hypertension and was transferred to the Children’s Hospital of Philadelphia.

“Prior to her passing, we were basically told even if she made it through this at all, she was going to require extensive medical treatment, probably for life,” Epstein noted. “We quickly learned we were going to be facing life with a child with severe chronic illness.”

The couple didn’t know where to turn for help in their situation. That’s when they discovered Fred’s Footsteps.

The nonprofit based in Bryn Mawr, Pennsylvania, provides direct financial assistance for families in the local region. Fred’s Footsteps will pay for non-medical expenses – such as household bills – to help working families stay on their feet through a child’s illness or injury.

In the midst of Epstein and Deegan’s paperwork to apply for Fred’s Footsteps, Madelyn passed away. The nonprofit, however, still wanted to help.

“Honestly, we didn’t expect it, but they heard our story and decided they’d help pay for certain expenses so we could pay the medical bills,” Epstein recalled. “They are incredible.”

At the time, Epstein said she and her wife were fortunate to also have a GoFundMe site set up by a friend after Dylan passed away, but with two deliveries, time out of work and various other expenses, the bills quickly added up. Deegan, who works in Voorhees, was the only one bringing in an income.

“People cannot begin to imagine what that looks like,” Epstein said.

As their daughter’s first birthday approached, the couple knew they wanted to acknowledge the day in a special way. Throwing a party and supporting Fred’s Footsteps at the same time was perfect. The celebration is a tribute to Dylan, too, even though the twins did not share the same birthday.

The event also is a way to raise awareness for Fred’s Footsteps. Epstein, a social worker herself, said most people have no idea the nonprofit exists.

Madelyn’s Birthday Bash Fundraiser is set for 1 to 5 p.m. on Sunday, Feb. 9, at The Estate at Monroe, 1351 N. Black Horse Pike, Williamstown. Tickets are $40 for adults and $10 for children and include dinner, drinks, music, dancing, children’s activities and a donation to Fred’s Footsteps. In addition, there will be raffles and door prizes.

Ticket sales continue through Friday, Jan. 24. Visit madelynbirthdaybash.causevox.com for tickets and more information.

Ticket sales are going well, Epstein said, and the support from friends, family and the community has been tremendous. She said, however, that not everyone understands why they’re holding the party or why this is how they choose to cope with the loss of their children.

“It was just really, really important for me to be able to do something positive with all this.

“To go through a loss this deep and to lose two children a couple months apart was not something I ever thought I could get through,” Epstein explained.

“After Madelyn passed away, I just knew I had to do something with this. If I didn’t, it would just devour me. Her life was impactful. I wanted to be able to share her story,” she added.

“This is the worst thing you could ever go through, but you can still bring meaning to your children’s lives.”

Madelyn’s Birthday Bash Fundraiser is 1 to 5 p.m. on Sunday, Feb. 9, at The Estate at Monroe, 1351 N. Black Horse Pike, Williamstown. Tickets are $40 for adults and $10 for children, and are available at madelynbirthdaybash.causevox.comTo learn more about Fred’s Footsteps, visit fredsfootsteps.org.