Maine nurse, mother of four, may have rare, incurable disease

Posted Feb. 05, 2014, at 3:26 p.m.
Sandi Tucker Kennedy with children Tucker, 9, twins Asher and Gunner, 5, and Skyler, 2.
Courtesy of York County Coast Star
Sandi Tucker Kennedy with children Tucker, 9, twins Asher and Gunner, 5, and Skyler, 2.

KENNEBUNK, Maine — A Kennebunk family and friends are hoping for a miracle.

After months of debilitating symptoms with no diagnosis, doctors this week say Sandi Tucker Kennedy, a 38-year-old wife and mom of four young children ages 2 to 9, is believed to have a prion disease, a family of rare progressive neurodegenerative disorders that take over the neurological system.

“She’s actually very young for it,” said Kennedy’s sister-in-law, Denise Tucker. “It’s causing all the neurological issues she’s having. Her vision has gone from double vision to very blurry, she’s tremoring, she can be cognizant but she has a very hard time getting things out, she needs help walking everywhere. There is no treatment for this. Basically, they manage the symptoms and this is always fatal. This is what we found out yesterday.”

Tucker said she’s never known anyone who lived life as fully as Kennedy, a nurse at Maine Medical Center. She described her as an active, vibrant woman and mother who included her children in that lifestyle, once bringing her oldest son along on a journey where she caught her own moose.

“I’ve never met anybody in my life who lived life every day to the fullest like Sandi did. She brought her kids with her everywhere, she made sure they experienced life every minute,” Tucker said. “She worked nights just so she could be home days with her kids. She is the most caring mom and wife I have ever met in my life. She’s amazing.”

But Kennedy’s health took a turn this past November, when she began experiencing symptoms of a cough and vertigo. By Christmas Eve, Kennedy was admitted to the hospital with symptoms consistent with having a stroke, but doctors found no evidence of that. By mid-January, her health worsened and she was brought back to the hospital with slurred speech, a loss of motor skills, deteriorating vision and memory loss. She was unable to walk.

After a plethora of tests from MRIs to blood tests to spinal taps, doctors thought Kennedy might have a rare form of cancer, but they could not locate any cancer in her body. Though still with no diagnosis, Kennedy was sent home at the end of January and was able to walk again.

Just days later, her health worsened and Kennedy’s husband, Jake, drove her to Brigham & Women’s Hospital in Boston, where doctors learned she had encephalitis, or swelling of the brain. She has been put on steroids since this past weekend in an attempt to reduce the swelling, but the swelling is not going down, Tucker said.

Finally, on Tuesday of this week, doctors at the Massachusetts hospital said they believe Kennedy could have prion disease, but there are no official tests that can definitively point to the disease and there is also no known cure, Tucker said.

“The neurological condition is going to continue. It’s a rapid-moving disease,” Tucker said. “The prognosis is four to 12 months from the onset of symptoms and she’s had symptoms for four months now.”

With Kennedy’s back-and-forth hospitalization over the past months, Tucker said she and her husband, who is a builder, have suffered a loss of wages and will also incur a great deal of medical costs as their insurance will only cover a portion of the medical expenses.

Friends and family members have created a page on YouCaring.com to support the Kennedy family. Visit youcaring.com and search for “Hope for Sandi.” Tucker said 100 percent of any money raised through the page will benefit the Kennedys.

An organized way for community members to support the family by cooking food and more is also in the works, Tucker said.

Kennebunk resident Sarah Nunan, who said she has known Kennedy since 2007, said their kids have grown up together and it’s hard “to put into words” the kind of friend Kennedy is.

“She is the strongest person I know, greatest mother, wife and daughter. She always has a smile on her face and laughter in her voice, and it is contagious,” Nunan said. “She has been there every day for me. She is one of my greatest rocks. Now is my time to be the rock to her kids, husband and her wonderful family. I love them with all my heart and always will.”

A therapist by trade, Tucker said, “I don’t have the coping skills for myself on this.”

“We’re just trying to figure out the next step and we appreciate everyone’s support. We’re very overwhelmed right now. As we get more details, we’ll let everyone know,” Tucker said. “Keep praying. We’re looking for a miracle.”

 

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