Family loses 4 sons to rare medical condition; 9 others diagnosed


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RIVERTON — The pain of losing a child is all too real for Shirlene Egbert. She's experienced it four times over the past 32 years.

The Riverton mother is now facing her toughest battle yet: Doctors recently discovered nine of 11 family members have the same rare medical condition that often leads to the deadly disease.

It all began in 1980 when Shirlene and her husband, Ken, lost their firstborn son, Preston. The little boy was diagnosed with cancer at 17 months old and succumbed to the disease three months later. At the time, doctors didn't know what caused it.

"They just said, 'There's no way you'll have another one with cancer. That's just really odd, you know, if you did,'" Shirlene said.

But then her second son was diagnosed with cancer at just 20 months old and died shortly thereafter. In just three years, the family had lost two baby boys.

However, it wasn't until their third son, who was diagnosed at 15 months, that they learned the problem was genetic. Some of the Egberts' children were born without a second p53 gene, a condition called Li-Fraumeni syndrome.

"That (second gene is) what helps people fight off cancer," Shirlene said, "and people with Li-Fraumeni have one gene, and so they can't fight off cancer like normal people can."

Shirlene and Ken decided to test the whole family for Li-Fraumeni.

"Seven kids were tested; and of those seven, five had the syndrome," Shirlene said.

One of those children was Michael.

"He was friendly. He was always loving his nieces and nephews. He just loved kids, and that's the kind of guy I grew to love," recalled Meisha Egbert, Michael's widow.

Miesha gave birth to their son four months after Michael died from a brain tumor.

"I felt like he was there with me. I felt him looking over my shoulder as I was looking right into our little baby's eyes," Meisha said.

She and her son spend a lot of time at grandma and grandpa's home, now more than ever.

Ken Egbert has been fighting a brain tumor for two years. He, too, has the Li-Fraumeni syndrome and is not expected to live much longer. But Shirlene says having family around is making his last days ones to remember.

Anyone wishing to help the Egbert family with medical expenses and upcoming funeral costs can do so by visiting their crowdfunding webpage at YouCaring.com*.

Shirlene's 3-year-old grandson, Logan, was tested as a baby for the Li-Fraumeni syndrome. He also has it, but his mom says they are staying proactive and will continue to take him to his normal checkups in order to stay ahead of any potential cancer diagnosis.


*KSL.com does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisors and otherwise proceed at your own risk.

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