Heartbroken mom launches desperate plea for blood and platelets as her adorable four-year-old son struggles in fight against 'rare and incredibly dangerous' pediatric neuroblastoma

A Utah mother of five has launched a desperate plea for blood and platelets as her four-year-old son struggles in a fight against a 'rare and incredibly dangerous' pediatric neuroblastoma amid a nationwide blood shortage.

JoriLynn Niemann told DailyMail.com that her world turned upside down in September 2023 when she and her husband got a call from their son Ripplen's school that he had stopped walking and was in agony.

JoriLynn and Daniel were thousands miles away in Hawaii celebrating their anniversary - their first trip together without their children - when they got the devastating news that doctors found a 'football-sized mass' in their son's abdomen located off his left adrenal gland and kidneys.

They rushed home and learned that he was diagnosed with 'high risk neuroblastoma,' a cancerous tumor that begins in nerve tissue of infants and very young children. If the diagnosis is missed, the tumor is fatal, as per National Institute of Health.

Ripplen's mother, a nurse, said it is an 'extremely aggressive and dangerous form of pediatric cancer with a 60 percent relapse rate and a 40 percent survival rate and known as a silent and deadly cancer.'

She continued: 'If we don't have someone that donates blood and platelets, I don't know that my son's going to live another day.

JoriLynn Niemann smiles with her 4-year-old son Ripplan who was diagnosed in September with a rare from of pediatric cancer 

Ripplen pictured at Primary Children's Hospital in Utah has undergone four months of treatement and has another 12 months ahead of him  

'It’s known as a silent and deadly cancer,' Ripplen (pictured) mom Jorilynn Niemann said. 'If we don't have someone that donates blood and platelets, I don't know that my son's going to live another day'

Ripplen is currently being treated at the Primary Children's Hospital in Utah. 

Niemann said his treatment plan involves 18 months of very intense 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 the hopes of saving his life.'

The heartbroken mother, has four other children ages three boys age 11, 7, 6, and a 2-year-old daughter. 

Three of her other sons have extensive special needs and rare genetic disorders that she described as 'life-altering,' and said her daughter is her only child that is 'not disabled.'

She said that all of her pregnancies were 'normal,' which made the ordeal  'even harder.' 

'Ripp is our youngest and when we were pregnant with him is when we got the diagnosis of the others. We had no idea before so that was a lot to handle in itself,' she said.

'We went from no special needs kids to four in about a week span in 2019,' Neimann said. 'Our boys' genetic disorders are so rare they are the only documented cases so far in the world.' 

The condition of her other children is a 'combination of 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 'some off and on tummy pain, and increased fatigue,' but nothing that alarming. 

Pictured: The Neiman family. Daniel and JoriLynn surrounded by their five children. Ripplen is standing in front of his mother wearing glasses

Ripplen has been in and out of the hospital since he was diagnosed with pediatric neuroblastoma, a rare and dangerous form of cancer 

Now, with the clock ticking and with her son in critical condition she and her husband are terrified.

'We are in survival mode,' she said, 'it is incredibly hard.'

'Ripplen is a four-year-old boy full of life and light. He has the sparkliest eyes and he’s an old soul. There’s not a person Ripplen meets that doesn’t become his best friend, she said.

'He’s dependent on donations because the chemotherapy wrecks his bodies ability to produce blood products on its own.'

Daniel Parra with the American Red Cross told DailyMail.com that recent episodes of severe winter weather have caused a setback in their ability to boost critically low blood supply levels.

'Over the past month, blood drives have been canceled in nearly every state where the Red Cross collects blood causing thousands of units of blood and platelets to go uncollected,' he said. 

He said that though they are 'grateful for the thousands of donors who have answered the call to give blood and platelets,' the number of donors to the Red Cross has fallen by more than 40 percent over the last two decades.

COVID-19, remote work and some pre-pandemic eligibility changes, and changes in blood transfusion protocols at hospitals, are some of the contributing factors that have led to the decline. 

Jorilynn is holding her son, Ripplen in their Utah home, as the pair smile and the adorable 4-year-old wraps one of his arms around his mom

A GoFundMe has been created 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 that involve spinal cord. 

'Ripplen's tumor has been removed and is now going into a bone marrow transplant for a minimum of 4 weeks,' Willmore said.

'This transplant is very hard on kids, but it’s the best chance they have of saving Ripplen's life and making sure the cancer never relapses. Neuroblastoma has a 50% relapse rate.'

'The Niemanns have befriended other families who have endured this pediatric cancer, and they said travel and food costs total at least $15,000 out-of-pocket.'

'Please continue to support Ripplen's parents as they support him during his hospital stay,' she wrote, in part. 

As of Monday $1,900 has been raised towards their goal of $15,000.