From the time Amy Lawson was born, God gave her a guardian angel on earth.
Now 34 with a family of her own, Amy Steward is the focus of a new book her mother has written. It’s about how her parents– Janice and Mike Lawson, longtime residents of Hope — worked for three decades to save her life from a devastating kidney disease that led to four organ transplants, amputation of her feet and other medi- cal struggles.
Janice Lawson will tell you the title of the book, “Saving Amy,” is an apt description of what her family took on after their first-born child arrived April 13, 1983.
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“This is a story about the sacrifices a mother has made for a daughter,” Mike Lawson said. “But it’s also the story of a lot of people who know Amy and have helped us have the faith to get through it.”
Janice Lawson said Amy’s ultimate survival was always in the hands of God, with an assist from individuals who came into the family’s orbit and provided life-saving options that were needed at each juncture and health crisis. They include people and organizations that sponsored fundraisers to help pay for Amy’s medical care and intervened on the family’s behalf.
Amy, married and a stay-at-home mom to her young son Joshua in Carlisle, Ohio, said she read her life’s story as her mother was writing it in Hope and offered some observations along the way.
“It was an experience to read it — the first part of the book — because I don’t remember a lot of that stuff. I did not know all that my parents went through and everything I went through,” she said. “I do remember that when I was about 5, I thought the hospital was a second home.”
Amy says she remembers telling a kindergarten classmate she had to go get her labs done at the hospital and being mystified when her friend had no idea what she was talking about.
“I thought everybody had to have it done,” Amy said of the tests, needle sticks and medical procedures she endured from infancy into adulthood.
When Amy was born, she looked like a normal healthy little girl. But when she went home, her parents saw something else.Within the first few weeks, the baby was constantly sick and wasn’t gaining weight. At first, doctors attributed the problems to a fussy baby, colic and nervous parents.
But after several emergency room and hospital visits, Amy was diagnosed with complete kidney failure and was referred to Riley Children’s Hospital in Indianapolis, as it was rare for an infant to have this problem, her mother said.
Admitted to the hospital’s intensive care unit, Riley doctors told the new parents they suspected Amy had hyperoxaluria, a rare genetic disease that causes oxalate crystals to accumulate in organs, which can cause kidney problems as the human body tries to get rid of the crystals.
The condition happens when a person’s liver is missing an enzyme that is used to break down oxalate in the body, the Lawsons explained, and they later learned both of them carried the gene that causes the condition.
Although Amy was immediately put on dialysis, a tricky proposition for an infant, the Lawsons learned the only thing that could save her life was a kidney transplant, which they were told could not be performed until Amy reached 20 pounds, more than double the weight she was when she arrived at Riley.
The couple was sent home with Amy after she had a peritoneal dialysis catheter placed in her abdomen, which required her mother — who was trained as a nurse — to become Amy’s full-time caregiver around the clock. That involved changing the fluid bag, cleaning all the medical equipment and completing the dialysis, which took two to two and a half hours each time. Just that process took half of every 24-hour period, including cleaning up after other problems caused by the dialysis, her mother said.
But the dialysis was just to keep Amy alive, her mother explained. A cure for kidney failure meant a kidney transplant, and the money to pay for it.
Through a happenstance contact with an IU Health physician, Amy and her family were referred to the University of Minnesota Hospital in Minneapolis, a referral that the Lawsons now say was God’s hand in helping Amy survive into adulthood.
Series of surgeries
As her first birthday approached, she weighed about 13 pounds and was being considered by the hospital for a transplant, with the kidney to be donated by her father. The transplant was initially successful — but before long, crystals were found in a biopsy of the new kidney. Just weeks after the transplant, test results determined the kidney was already on its way to failing.Amy also underwent a series of complications after the transplant surgery, which required return trips from Indiana to Minnesota, to deal with a bowel obstruction, infections and other complications. Eventually, Amy’s doctors put her back on dialysis.
With a need for another kidney, the second donated organ would come from her mother.
In September of 1984, the family relocated to Minnesota with the hopes of preparing Amy for a second transplant, which happened on March 7, 1985.
But the medical challenges for Amy, not quite 2 years old, were not over yet.
After the family — now back in Hope — started Amy in school, the Lawsons learned they were expecting another baby, something that invoked new fears of having another child with the genetic disorder. But the family elected to forgo testing and have the baby, Katie, who was initially suspected of having the disorder, but later was found to not have it.
As Amy’s donated kidney continued to work, she worked to overcome some hearing and vision loss from her earlier medical struggles, but went through school in Indiana and graduated from Hauser High School in 2002.
She began thinking about marriage and children and online met a young man who would eventually become her husband. She and Matt Steward married on July 11, 2009, and moved to Ohio. In December 2011, Amy told her parents that she was pregnant. Their son, Joshua Aaron Steward, was born Aug. 11, 2012.
But soon after, Amy’s kidney again began to fail, resulting in her return with her son to her parent’s home in Hope — and a return to a dialysis schedule — while her husband continued to work in Ohio.
Doctors eventually told the family that the oxalate crystals were accumulating in her blood vessels, affecting the blood flow to her feet. After a 40-day hospital stay, the doctors asked Janice to convince her daughter to have her feet amputated, with the belief that they could save her right heel.
“I felt so heartbroken for Amy and so confused,” her mother wrote in the book about that surgery. “We had been so sure God would heal her feet.”
At this point, Janet was caring for Amy, for Amy’s 2-year-old son Joshua and for the rest of the Lawson family, while shepherding Amy to appointments for hyperbaric chamber treatments and dialysis, which turned into a 24-hour job.“We didn’t know what normal was anymore,” Janice said. “We are Christians, and we have faith in God. People were put in our path, our church, there were a lot of prayers. I’d be angry at God and I’d be reminded there are worse things. People have lost their children and I still had mine. But sometimes I asked myself what terrible thing have I done, to have this genetic problem put on ourselves.”
The ultimate solution to all of Amy’s medical problems was a liver and kidney transplant, but it was a risky surgery and family members were unsure whether she could survive it, or even if a match could be found to provide the transplant, her mother said.
Amy was put on the transplant list in December 2015 and was told to expect at least a four-month wait. The call came in March that the organs were available and she received them in a succession of surgeries, returning to her parents’ home on April 1, 2015. By July, Amy was able to return to her husband in Ohio and has not had any medical complications since, with the liver and kidney lab tests coming back perfect, her mother said.
Life for Amy today involves working to perfect her foot prosthesis on each leg and getting to know her son all over again. She had missed some of his growing-up time as she recuperated from the numerous medical procedures over the years. She recently had a health checkup back in Indiana and passed with flying colors, and won’t have to return for another check for a year.
Being a mom herself has brought a new appreciation to Amy as to what her mother has done for her over the past three decades — the 24-hour schedules, the constant worrying — to give her the life she now has.
“I find it amazing how my mom handled things,” Amy said. “She will always be my hero.”
Amy said she was recently doing household chores at her home, listening to some Christian music, when a familiar tune came on the radio, “I Trust You Lord” by Keith Moore, based on Proverbs 3 in the Bible. It occurred to her that the last time she had heard it, she was being cared for by her mother, recovering from dialysis, thinking all she wanted was to get home to Ohio and be with her son.
“I’m so blessed to be here and to have these little moments with my son and watch him grow up,” Amy said, adding that it wouldn’t have been possible without her mom.
Mike and Janice Lawson, Hope, have two daughters, Amy and Katie, and have been foster parents to 15 children, some of them with special needs, during the past 10 years. Two of those children, Gabriella, 11, and Jaelynn, 6, were adopted by the couple.
“Saving Amy” by Janice Lawso, is a self-published book that is available through michaellawsonministry.com.
Portions of the book contain narrative, graphic descriptions and photos that may be disturbing to some readers.
For more information, or to contact the family, email email@example.com
To learn more about hyperoxaluria, visit the Oxalosis and Hyperoxaluria Foundation at ohf.org.
If you wish to make a donation to support people who suffer the effects of the disease, contact the foundation at OHF, 201 E. 19th St., Suite 12E, New York, NY 10003.
What: Book signing for “Saving Amy” by Janice Lawson
When: 9 a.m. July 17
Where: Bartholomew County Public Library, 536 Fifth St., Columbus
For information, or to purchase a book in advance, call 812-350-7365.