'This is not the end': Toddler lives on as organ donor

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Becca and Dan Kruck want to tell you about their 3-year-old son Henry, an expert cuddler who loved the rituals of bedtime, who loved splashing in the pool and listening to the Super Simple Songs channel on Youtube.

He loved his new baby sister Ella too, though he wasn't sure exactly what to make of her, as she had no buttons to push and produced no songs.

Becca shows videos that she's saved on her phone: Henry, splashing at the pool. Atop a horse, tentative at first, less so later. Shirtless in a high chair, laughing as he plays with whipped cream doused with food coloring. "That's his laugh. He had a great laugh," she says softly.

There's another video, of Becca gently singing "You Are My Sunshine" to him. She sighs. "Those pretty blue eyes."

She puts her phone down on the dining table of her Westside home. "Yeah, this is the stuff that kind of keeps me going right now," she says. "I just feel more peaceful when I think about his life, and not so much the end."

The end: On Feb. 26, the day after Henry was declared dead, Becca, once a Navy journalist, wrote again in the blog that she's kept since before his birth.

The title she gave this entry: "This is the end, this is not the end."

This is not the end: Upon his death, Henry's parents decided he would become an organ donor. His liver went to a 3-year-old fighting cancer in Texas, they were told, and his kidneys went to Tampa. If they can someday meet the children who were helped by him, the Krucks would like that.

This is not the end: "It's the end of his life here on earth," Becca said, "but we're very spiritual people so we believe in heaven and living with all of his family in heaven. It's the end of us parenting him on earth, but not the end of us parenting him at all."

The Krucks are Navy veterans who in 2002 spent six months together aboard the USS John F. Kennedy as the aircraft carrier deployed to support Operation Enduring Freedom in Afghanistan. But it was a big ship; they never met. That didn't happen until a month later, at a birthday party for a mutual friend. This summer, they'll have been married 12 years.

They're both 34. Becca is from Nashville, Tenn., and now teaches English at Oakleaf High School. Dan is from western Minnesota, working in purchasing at JEA.

Henry was born July 1, 2013. Through sonograms and genetic testing, they had learned he would be born with 1p36 deletion syndrome, in which a small segment of DNA is missing. Some babies with 1p36 have a cleft lip and heart problems, as Henry did (he had surgery for each issue as a baby), as well as developmental delays and various physical problems including low muscle tone and seizures.

As the Krucks found out more about 1p36, Becca began a blog, named the Kruck Kronicles. She'd found comfort and information from what other parents of 1p36 babies had written online; now perhaps, she thought, she could help those to come.

In it, she detailed the difficulties - hospitalizations, seizures, surgeries - as well as the joy Henry brought to the family, with pictures of him on the beach, eating birthday cake, kissing his new baby sister.

Henry could sit up on his own, and was working on standing and taking a few baby steps. He was nonverbal, Becca said, but "he had his own way of communicating with us. Smiles, laughs, whines, taps."

He had frequent seizures when he was very young, but they had seemed to ease in recent months.

But Dan and Becca had to take him to the emergency room on Feb. 23 after a particularly bad seizure. After long hours there, they came home and he ate and played and slept.

Just after midnight on Feb. 24, Becca was awakened by Dan, in Henry's bedroom, screaming Henry's name and then her name. She called 911 and soon a rescue crew was there. Henry was taken to an emergency room and then to Wolfson Children's Hospital around 3 a.m. There were tests and prayers, and more tests and prayers.

Many long hours later, just after 6 p.m. the next day, Henry was declared dead.

"Of course we now know that his life ended, there on the floor of his bedroom the day before," Becca wrote in her blog. "The medicines and machines kept his poor, broken body going, but his spirit was already gone."

He was cremated. Becca and Dan didn't grow up in Jacksonville, and perhaps one day they'll move back to one of their hometowns. "It's kind of morbid," Becca says, "but I couldn't imagine putting his tiny little body in the ground, I know it's not really him, but just leaving him there . "

The Krucks say they have to stay strong for Ella, who was born a few months ago with no health issues.

"I'm still trying to process everything," Dan says.

"It comes unexpectedly," Becca says.

She had to cancel Henry's diaper subscription with Amazon, and put away his sippy cups that had been left in the drying rack by the sink. That was tough.

But the Krucks want to talk about Henry, about the joy he showed in life, the people he touched.

"That's how I'm going to get through this," Becca says. "Celebrating him every single day and not thinking about living without him."

Others have helped. Family and friends have come to visit. Colleagues of Becca from Oakleaf have donated their time off so she can stay on leave. Friends from church, Trinity Lutheran in Riverside, have been supportive. A friends set the family up on Meal Train, an online service in which people volunteer to deliver food to their house. Within two hours, all the slots were full for the next three weeks.

In her blog post. "This is the end, this is not the end," Becca closed with this thought about Henry and the people he met along the way.

"If this process has shown me nothing else, it's shown me the goodness in people's hearts and it reminded me just how many people my little man has affected. I don't think anyone who ever met him, wasn't affected by him. It just wasn't possible. His light," she wrote, "was that bright."


Information from: The (Jacksonville) Florida Times-Union, http://www.jacksonville.com