Human Interest

Grieving Parents Honor Their Late Son in Emotional Photo: 'He Was the Angel Holding Us Together'

Steven and Gloria Kimmel, along with their newborn daughter, pay tribute to the son they lost to Werdnig-Hoffmann disease with a moving portrait

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Published on September 21, 2017 11:29 AM

Two Indiana parents posed for a touching family portrait with their newborn daughter that pays tribute to their son who died at just 14 months old.

Not long after Gloria and Steve Kimmel lost their infant son, Isaac, to spinal muscular atrophy on July 31, 2015, they each got a single angel’s wing tattooed on their backs to honor him. The tattoos, when placed together, create a beautiful pair of wings that represent their son.

“He was half of each of us, so we each had one of his wings to hold us,” Gloria, 29, tells PEOPLE. “He was the angel that was holding us together when we were so lost without him. The tattoos are a reminder that he is always with us in spirit.”

Isaac was diagnosed with spinal muscular atrophy type 1, also known as Werdnig-Hoffmann disease, in 2014. The Muscular Dystrophy Association and the National Institute of Health say infants who develop SMA type 1 have muscle weakness, breathing distress and a weak cry due to loss of lower motor neurons in the spinal cord and brain stem. They also experience difficulty swallowing and sucking and do not reach the point of being able to sit up or stand by themselves. It affects 1 in 10,000 infants worldwide, and a majority do not live past two years of age because of respiratory failure.

“To be living in 2014 and have medical professionals tell you to take your son home and love him, as there was nothing they could do, is just beyond comprehension,” Gloria explains, adding she and her husband had not heard of the disease before Isaac was diagnosed.

“The helpless feeling that you know your child is on borrowed time and there isn’t anything you can do about it is paralyzing,” she says. “Every moment becomes so precious, we never took anything for granted, and lived our lives with our baby boy filled with as much love and happiness that we could.”

gloria-kimmel-2 — Courtesy Gloria Kimmel

Two years after Isaac’s passing, the couple welcomed their newborn daughter, Claire, into the family on June 27, 2017. To celebrate her birth, the couple planned a photoshoot, and Gloria realized the couple could use their angel wings to incorporate Isaac into the family portrait.

“I just thought it would be so wonderful to have our memorial for our son be part of her photo shoot welcoming her into the world, since Isaac couldn’t physically be there with us,” Gloria says.

gloria-kimmel-1 — Courtesy Gloria Kimmel

The powerful photograph, taken by photographer Megan Miles, shows baby Claire laying on her parent’s backs with Isaac’s angel wings behind her—creating a complete family portrait.

“When I saw it for the first time, I saw our entire family,” Gloria says. “Like Isaac was there with us.”

The photograph has generated a ton of outpouring over social media. Gloria’s sister, Grace, posted it to her Twitter account and it has gained over 70,000 likes and 20,000 shares. Many Twitter users commented that they, too, had a child pass from SMA.

There is hope for children and adults affected by SMA—the Federal Drug Administration approved Spinraza, the first-ever FDA-approved therapy for SMA, in December 2016.

For Gloria, the reaction over social media has given her comfort that Isaac’s life is continuing to ripple out and touch people.

“The heartfelt compassion of everyone who has heard our story, shared their own stories, offered condolences, and shared in joy of the birth of our daughter,” she says, “is a beautiful reminder of how much good there is in this world.”