United by Heartbreak: Moms of Two Terminally Ill Children Bond Over Shared Pain

Lisa Koziell-Betz, whose 6-year-old daughter, Morgan, died of neuroblastoma in 2007, reached out to Julianna Snow's mother

Photo: Courtesy Lisa Koziell-Betz

When Lisa Koziell-Betz read about the extraordinary conversations about death Michelle Moon had with her terminally ill 4-year old daughter, Julianna Snow, last year, she just had to reach out.

“I have never done that before, but I wanted them to know I have been where they are at now,” Lisa, 50, tells PEOPLE. “My heart went out to Michelle and to the family and to Julianna.”

Lisa’s 7-year-old daughter, Morgan, died of stage 4 neuroblastoma in January 2007.

Julianna, now 5, has a rare, aggressive form of Charcot-Marie-Tooth Disease or (CMT), an incurable, degenerative, neuromuscular disease that has left her able to move little more than her shoulders.

Her doctors say the next cold she gets could kill her. She has told her parents she does not want to return to the hospital if she gets sick again. Her parents emphasize they are the ones making the decisions but “look to Julianna to guide us,” says Michelle.

The family made headlines across the world last October after CNN.com posted a two-part story about them. They have been criticized for allowing Julianna to have input into her care, saying a child that age does not understand what death is.

“That’s what got me mad,” Lisa says. “They do know – or some know. Morgan knew what death was. And it sounds like Julianna knows.

“I sent her an email that said, ‘Bless you. Hang in there. Do what feels right,’ ” says Lisa, a recreation programmer who lives in Peterborough, New Hampshire.

“It is a hard journey, but not to honor a child in this type of situation because they are a kid, is wrong,” she adds. “Some kids have a deep knowing – it cannot be discounted.”

Michelle, 43, a neurologist, says hearing from Lisa has helped her.

“I just need to know that families can survive this,” she says, “so the fact that she’s still standing gives me hope.”

Michelle says she’s heard from about a dozen families since her daughter’s story made headlines.

“Most had lost their children years ago and contacted me to say that they understood,” she says. “Many told me that they had had similar conversations with their children, and they also felt that their children understood far more about life and death than would be expected for someone their age.”

Lisa understands on another level as well. She made a decision for her child that some found controversial. When her daughter’s cancer came back after a lengthy remission in the spring of 2006 – with 0 percent of a cure – she opted to forego any kind of treatment for the summer and just let her be a kid.

“The doctors wanted us to get her into a treatment protocol,” she says. “I said, ‘Can we give her the summer?’ And they said, ‘Sure.’ ”

She, too, was criticized for her decision.

“Some people believe that we should have treated in the hopes of a cure, at any expense,” she says, “but I am proud that we chose to honor Morgan for who she was – an individual – rather than her becoming a statistic .all in hopes of ‘being the one” who [beat] all the odds.

“This, in my book would have been wrong and would have been incredibly selfish on our part,” she says.

Morgan had “an awesome summer,” she shares. “She swam for the swim team. She actually got some ribbons. She was tan. She was running around. She did the monkey bars, which was something she hadn’t done for years. In fact, the previous year she’d broken her arm on the monkey bars.”

Seeing her daughter so carefree was amazing, she says.

“You look at a kid who knows she’s terminal and she’s out there having a ball, enjoying life for what it is,” she says. “When she’s in treatment, she can’t have close contact with people; she’s got to take a nap because of chemo, but here she was living in the moment instead of going by expectations and clocks and everything else.”

By October, though, Lisa opted for chemo and radiation – “for comfort not treatment” – to help her with the pain she was experiencing from the cancer spreading to other parts of her body.

Morgan died at home in January 2007.

To this day, Lisa says she does not regret giving her that last, carefree, painless summer.

“I know in my heart of hearts it was the right thing to do for her,” she says. “She wasn’t going to be cured. She deserved to be a kid, so that’s what she was.”

And she has this to say to Michelle: “Just follow your heart. It’s wrong to dismiss a child just because they’re a child.”

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