A Utah mother of five has made a desperate plea for blood and platelets as her four-year-old son struggles to battle a “rare and incredibly dangerous” childhood neuroblastoma amid a nationwide blood shortage.
JoriLynn Niemann told DailyMail.com that her world was turned upside down in September 2023 when she and her husband received a call from their son Ripplen’s school saying he had stopped walking and was in pain.
JoriLynn and Daniel were celebrating their anniversary thousands of miles away in Hawaii – their first trip together without their children – when they received the devastating news that doctors found a “football-sized mass” in their son’s abdomen, located next to his left adrenal gland and kidneys.
They rushed home and learned that he had been diagnosed with “high-risk neuroblastoma,” a cancerous tumor that begins in the nerve tissue of infants and very young children. If the diagnosis is missed, the tumor is fatal National Institute of Health.
Ripplen’s mother, a nurse, said it is an “extremely aggressive and dangerous form of childhood cancer with a 60 percent relapse rate and a 40 percent survival rate, and is known as a silent and deadly cancer.”
She continued, “If we don’t have someone to donate blood and platelets, I don’t know if my son will live another day.
JoriLynn Niemann laughs with her 4-year-old son Ripplan, who was diagnosed with a rare form of childhood cancer in September
Ripplen, pictured at Primary Children’s Hospital in Utah, has completed four months of treatment and has another 12 months ahead
“It’s known as a silent and deadly cancer,” said Ripplen (pictured) mother Jorilynn Niemann. “If we don’t have someone to donate blood and platelets, I don’t know if my son will live another day.”
Ripplen is currently being treated at Primary Children’s Hospital in Utah.
Niemann said his treatment plan includes 18 months of high-intensity chemotherapy, surgery, immunotherapy, radiation and a bone marrow transplant.
Since his diagnosis, he has undergone four months of treatment and has another 12 months ahead of him. In a few weeks, he will be admitted for high-dose conditioning chemo and a bone marrow transplant, his mother said, “in hopes of saving his life.”
The heartbroken mother has four other children, ages three boys, ages 11, 7, and 6, and a 2-year-old daughter.
Three of her other sons have extensive special needs and rare genetic conditions that she described as “life-changing,” and said her daughter is her only child who is “not disabled.”
She said all her pregnancies were “normal,” which made the ordeal “even harder.”
‘Ripp is our youngest and when we were pregnant with him we were diagnosed with the others. We had no idea about it yet, so that in itself was a lot of work,” she said.
“In 2019, we went from children with no special needs to four in about a week,” Neimann said. “Our boys’ genetic disorders are so rare that they are the only documented cases in the world to date.”
Her other children’s condition is a “combination of 2p16.3 microdeletion syndrome, 16p11.2 microdeletion syndrome, SPEG-related CNM, autism level 3 and 11q duplication.”
Before Ripplen was diagnosed, she said he had “occasional abdominal pain and increasing fatigue,” but nothing alarming.
In the photo: the Neiman family. Daniel and JoriLynn surrounded by their five children. Ripplen stands in front of his mother with glasses
Ripplen has been in and out of the hospital since he was diagnosed with childhood neuroblastoma, a rare and dangerous form of cancer
With the clock ticking and her son in critical condition, she and her husband are terrified.
“We’re in survival mode,” she said, “it’s incredibly difficult.”
‘Ripplen is a four-year-old boy full of life and light. He has the most sparkling eyes and he is an old soul. There isn’t a person Ripplen meets who doesn’t become his best friend, she said.
“He depends on donations because the chemotherapy destroys his body’s ability to produce blood products.”
Daniel Parra of the American Red Cross told DailyMail.com that recent periods of severe winter weather have caused a setback in their ability to stimulate critically low blood supply levels.
“Over the past month, blood drives have been canceled in nearly every state where the Red Cross collects blood, leaving thousands of units of blood and platelets uncollected,” he said.
He said that while they are “grateful for the thousands of donors who have answered the call to donate blood and platelets,” the number of donors to the Red Cross has fallen by more than 40 percent over the past two decades.
COVID-19, remote work and some changes in eligibility before the pandemic, and changes in blood transfusion protocols in hospitals, are among the factors that led to the decline.
Jorilynn holds her son Ripplen in their Utah home as the couple smiles and the adorable four-year-old wraps one of his arms around his mother
a GoFundMe was founded by family friend Stephanie Willmore to help Neimann with their escalating medical bills and travel expenses.
One of their upcoming hospital visits is New York, where Ripplen will undergo specialized surgery for tumors involving the spinal cord.
“Ripplen’s tumor has been removed and is now undergoing a bone marrow transplant for at least four weeks,” Willmore said.
‘This transplant is very hard on children, but it is the best chance they have to save Ripplen’s life and ensure the cancer never comes back. Neuroblastoma has a 50% relapse rate.”
“The Niemanns have made friends with other families who have endured this childhood cancer, and they said the travel and food costs total at least $15,000 out of pocket.”
“Please continue to support Ripplen’s parents as they supported him during his stay in the hospital,” she wrote in part.
As of Monday, $1,900 has been raised toward their $15,000 goal.