When Adam started kindergarten, his teacher could tell he was behind.
The other kids could color inside the lines. The other kids could identify red objects. Adam could not.
“He was my first child,” said Adam’s mother, Missy Ward. “I had no one to compare him to.”
Then, Adam started having bathroom accidents. He started falling.
Adam Ward, who was diagnosed with Niemann Pick C at 6 years old, loved to ride his bike.
Photo provided by Missy Ward
“He would trip over in the mall,” Ward said. “Like a marionette — without the strings, the puppet just falls. It would be like that.”
At the same time, the newest addition to the Ward family, Amanda, was in and out of the hospital. Amanda was born with cystic fibrosis and an enlarged liver, a condition that required her to have a liver transplant when she was four months old.
After the liver transplant in February 1995, Amanda tested positive for Niemann Pick Disease type C, a rare, inherited genetic disease that affects the body’s ability to transport and process cholesterol and other fatty substances inside the cell.
The Ward family posing for a photograph at Missy Ward’s brother’s wedding. Adam Ward was 7, Chelsea was 5 and Amanda was just over 2-years-old.
Photo provided by Missy Ward
Niemann Pick C is progressive and neurodegenerative, presenting as delayed child milestones and loss of muscle quickly. Other symptoms include clumsiness, learning difficulties, difficulty swallowing, slurred speech and seizures.
At 6 and a half, after a year and a half of symptoms, frustration and developmental declines, Adam was also diagnosed with Niemann Pick C.
“Each child is different,” said Dr. Hans Andersson, a pediatric professor and director of the Hayward Genetics Center at Tulane University in New Orleans. “Both in the severity and the time their symptoms appear.”
Adam, who was five years older than his sister, declined rapidly after his diagnosis. He never progressed in his speech or motor skills. He lost his ability to ride a bike and to eat food that he liked.
Missy Ward, left, with her three children Chelsea, Adam and Amanda Ward.
Photo provided by Missy Ward
“At the time, there was nothing,” Ward said. “No treatment. No cure. When our kids were diagnosed, there was only one known case in Louisiana.”
As Amanda got better, hitting childhood benchmarks, Adam got worse.
He was soon confined to a wheelchair and fed through a tube.
Four years after his diagnosis, Adam died in June 2000. He was 10.
“He was just goofy,” Ward said. “He would just laugh and play at all kinds of things.”
Shortly after his death, however, Amanda began to mirror her brother’s pattern of decline.
At 5 years old, Amanda started to lose her fall reflex — just like Adam.
“Her falling was precipitated by laughter,” Ward said. “But everything was funny to Amanda. Our living room — our house — for years was covered in blankets and bean bags to catch her fall if she laughed too hard at something.”
Amanda had a grand mal seizure in 2004 and never regained her ability to smile or to laugh. And, in December 2004, she died at 10 years old — just like Adam.
A future full of genetics
When Adam and Amanda were diagnosed, getting the genetic test results took several weeks. There was only one laboratory in the country that was running the genetic tests necessary to diagnose their rare disease.
Now, genetic diagnosis takes a few days.
Technology and awareness for rare diseases have come a long way in the last 20 years.
Back then, Andersson treated both Adam and Amanda for Niemann Pick C at Tulane. He diagnosed Adam using a skin biopsy, and he helped treat Amanda after her diagnosis.
Although technology is improving, and more people are dedicated to finding treatment options for patients, there is no cure for Niemann Pick C.
However, the Federal Drug Administration has approved arimoclomol, or Miplyffa, in combination with the enzyme inhibitor miglustat to treat neurological symptoms associated with Niemann Pick C in adults and children 2 years of age and older.
“It’s not a cure,” Andersson said. “But it may slow the process.”
Andersson, as the director of Hayward Genetics Center and the Karen Gore Chair for Human Genetics at Tulane, has seen almost all of the patients in the state with rare disorders.
If Louisiana doctors find abnormal results in newborn screenings — which now test for approximately 30 different diseases and conditions including cystic fibrosis — children will likely be sent to Andersson.
Andersson sees over 500 patients in the state each year for genetic disorders.
“This state is massively under-resourced,” Andersson said. “We only have seven clinical geneticists and two biochemical geneticists who handle this type of disease. Many patients are not referred or seen.”
In his career, he has seen monumental shifts in the field of genetics.
“We can now diagnose children who are at risk even if they don’t have symptoms,” Andersson said. “And we don’t have to do invasive biopsies, we can just take a sample of saliva or blood to do full genome sequencing.”
Andersson said he and his team at Tulane are part of a collective sharing in genetics research who are discovering diseases no one knew existed before exome or whole genome sequencing.
“We didn’t know what we were looking for,” Andersson said. “But now we have a population of 100 with the same markers. That is a disease. There are many of those cases in the last decade.”
Finding Adam’s voice
The Ward family attends the National Niemann Pick Disease Foundation conference each year, providing care for people and children diagnosed with the same condition that Adam and Amanda had while parents, caregivers and doctors meet in conference rooms about the latest on the disease.
“We’re still fighting for a cure,” Ward said. “We’ve made a lot of progress in this disease. The wheelchair comes in a lot later than previous years and cases.”
Missy and Jim Ward have lived in the same house in Metairie for 37 years. They watched, laughed and cried with their children Adam and Amanda during their brief lives. They also watched their middle child, their daughter Chelsea, grow up and become a neonatal ICU nurse.
“We have to remember our whole family,” Ward said. “And the people we meet every year, the families we speak to every year, they are our family too.”
After Adam’s death, Ward started a new venture: looking through the eyes of her son who became nonverbal.
Ward began writing.
And writing and writing.
Adam Ward, after his diagnosis of Niemann Pick C when he was 6-years-old, was soon confined to a wheelchair and restricted in his movements.
Photo provided by Missy Ward
Soon, she had stories of what Adam may have been thinking. What he might of said when he was in the delivery room meeting Amanda for the first time. When he was in that kindergarten class. When he tried to sing Elvis Presley’s Crocodile Rock. What would he say to his sister who was also suffering?
“I always wondered what was going on in his brain. What did he think of all of this?” Ward said. “It must have been so incredibly frustrating that he couldn’t say what he wanted to say.”
Ward’s husband, and father to Adam, Amanda and their youngest daughter Chelsea, would often read the words she wrote for their son.
“We’ve gotta get this published,” Jim Ward said to her one evening.
In 2024, 20 years after the death of their second child to Niemann Pick C, Ward started to write again. She also edited and designed a memoir about Adam.
Missy Ward started writing “Adam’s Voice” after her son’s death in 2000. The memoir of her son, Adam’s life was printed and published in 2025.
Photo provided by Missy Ward
The Wards found Christian Faith Publishing and, in May 2025, “Adam’s Voice” was set, bound and in their hands.
“It’s been special to tell our family’s story,” Ward said. “We hope it can help others heal and know that they’re not alone.”
“Adam’s Voice” by Missy Ward is available on online book stores including Barnes and Nobles, Amazon, Kindle and more.