SAVANNAH, Ga. (AP) — For her sixth birthday in June, Tess Kromenhoek was at the Medical University of South Carolina in Charleston where she was given a new kidney, a priceless gift that came seven months after she underwent a liver transplant in Chicago. Both surgeries were deemed necessary for the little girl last fall after she was diagnosed with a rare genetic liver disorder.
After a few complications, Tess finally is back in Savannah and enrolled in kindergarten at St. James Catholic School. For all intents and purposes, Tess looks and acts like a typical 6-year-old. She likes Barbie dolls, loves cuddling with her mom, dad and brothers, and enjoys playing with Lambert, the family dog.
But nothing was typical about Tess’ condition a little less than a year ago. The discovery of a disorder called primary hyperoxaluria made her critically ill in a matter of hours and was a bolt out of the blue for the seemingly healthy child. As her mother Alison recalls, it was one day in September 2011 when Tess came home from pre-kindergarten feeling puny. Just two days later she was on a medical helicopter being flown to Augusta for treatment.
After the initial diagnosis, Alison and her husband, Jon, were dealt the blow that — to survive — their daughter would need two organ transplants. Tess was transferred to Chicago Children’s Hospital to await a liver. (The disorder occurs when the liver doesn’t produce an enzyme that prevents a buildup of a substance called oxalate, Alison explained. When the oxalates build up, they begin attacking other organs. In Tess’ case, the first organs to be attacked were her kidneys.)
The Kromenhoeks decided that Tess and Alison would move into an apartment near the Chicago hospital while Jon would stay in Savannah with their two sons, Mac, 8, and 6-year-old Luke.
What has happened during a year’s time has been a whirlwind of emotions for the Kromenhoeks.
“We are trying to get back into the swing of life,” Alison said last week during an interview at the family’s Herb River Bend home. “We are thrilled to be back to some sense of normalcy. In one sense I cannot believe that Tess has a new liver and a new kidney and has a chance at a great life.
“On the other hand, I look at my boys and realize that I’ve missed a year out of their lives,” she said, her eyes welling with tears.
Obviously a strong woman and mom, Alison quickly recovers and emphasizes how much support the family has received from their various “families,” a word she uses to describe their relatives, church and school friends, neighbors and the community as a whole.
The Kromenhoeks have lived in Savannah only four years, but Alison says she feels like they have lived here forever. “The outpouring of love we have felt is a true sentiment of Southern hospitality.”
On Sept. 7, for example, proceeds from the “Sandfly Crab Crawl” will benefit Tess. The family also has been helped through a golf tournament and various other fundraising activities. Although the Kromenhoeks have health insurance, they paid out of pocket for medical charges that insurance didn’t cover, as well as other expenses.
Alison says the “unsung hero” of the entire experience probably has been her husband, she said. Jon had started his own business only a month before Tess was diagnosed. He had to support two households, become Mr. Mom and build his business, she adds.
“He is an amazing partner,” she continues. “To say he stepped up to the plate is an understatement.”
Jon also was the first family member to be tested as a potential kidney donor for Tess. “Much to our dismay he was not a match,” Alison says. Next it was Alison who went through the “very long and involved process” of being tested. The last test revealed that she was not a match, which was “devastating and a real blow.”
Three other relatives also were rejected before Alison’s second cousin, Danielle Frazzetto, was convinced that she would be a match. “We had the fondest memories of being together as children,” Alison says. “(Danielle) came to Chicago and we found out, in fact, that she was Tess’ perfect match,” Alison adds, smiling.
At that point, Alison and Jon decided that the emotional and financial strain of being so far away in Chicago “all became too much to bear,” Alison admits. “We decided to come nearer to home,” she adds. “We made a decision — a very, very difficult one — to have the kidney transplant at the Medical University of South Carolina in Charleston.”
On June 7, Tess’ sixth birthday, she underwent the kidney transplant and “received the greatest birthday gift a girl could ever want,” Alison says. “We call it her rebirth.”
Unfortunately, the next two and a half months weren’t smooth sailing for Tess. She ended up having to return to Chicago for a portal vein reconstruction, a surgical procedure that was “just as invasive as a liver transplant,” according to her mom.
These days, the Kromenhoeks are staying close to home and savoring simple things like gathering around the table for family suppers. As Alison says: “Life is an absolute blessing.”
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