Parents raise awareness for disease that impacted daughter
When Fort Dodge parents Amanda and Ben McMullen brought their newborn daughter home from the hospital in the spring of 2016, they were overjoyed.
They named the newest member of their family Danielle.
“We were just happy,” Amanda McMullen said. “An almost 10 pound little girl. She was fine.”
But at just 8 days old, their daughter’s temperature spiked to 102.5. And by the time Amanda McMullen took her to the emergency room at UnityPoint Health — Trinity Regional Medical Center, her temperature was up to 104.5.
“It was just horrible seeing her go through the tests,” Amanda McMullen said.
She said doctors were having a hard time figuring out just what was wrong with her.
“Her body was so dehydrated from the temperatures, it was impossible for them to find a vein anywhere for an IV,” Amanda McMullen said.
As a result, Danielle McMullen was airlifted to Mercy Medical Center in Des Moines.
“From all the meds they had given her in a span of three to four days, they pumped her so full of antibiotics it just shut her kidneys down,” Ben McMullen said.
And by two weeks old, Danielle McMullen no longer had kidney function.
She would later go to the University of Iowa Stead Children’s Hospital in Iowa City for care.
“It was May 11,” Amanda McMullen said. “That’s when we became Iowa City residents from that day on. We left everything behind in Fort Dodge, even our 4-year-old daughter. We left her with Ben’s parents, so we could be with Dani.”
When she was 1 month old, doctors diagnosed Danielle McMullen with hemophagocytic lymphohistiocytosis, otherwise known as HLH.
HLH is a condition where the body makes too many activated immune cells. People with HLH usually develop symptoms within the first months or years of life.
“The doctor explained that it puts your immune system in overdrive and your body doesn’t get a chance to shut off and calm down,” Amanda McMullen said.
She said most patients diagnosed with the disease don’t survive because it’s not diagnosed quickly enough.
“They told us one in 100,000 kids get it under 6 months and she was 1 month old,” Amanda McMullen said.
“She was one of the youngest to get it,” Ben McMullen said. “They told us she wouldn’t live to 6 months.”
Danielle McMullen kept fighting.
“She was given chemo, steroids and hooked to a dialysis machine,” Amanda McMullen said.
But Danielle McMullen would need a stem cell bone marrow transplant.
And she got it on Sept. 8, 2016.
“The donor was a selfless person from Australia,” Amanda McMullen said. “We haven’t met her yet, but plan to.”
After the transplant, Danielle McMullen was able to go home.
“The summer of 2017 was the best summer ever for our family,” Amanda McMullen said. “Because we just felt like we had our family.”
“She got better for a little while,” Ben McMullen said. “But it (transplant) didn’t take.”
“After 180 days into it we find that her body rejected it,” Amanda McMullen said.
Danielle McMullen would need another transplant.
“She technically had three transplants,” Ben McMullen said. “The the first two were from the same donor.”
The third transplant was made possible through a donor in Europe.
“She reached out to us and sent Dani a letter and a teddy bear,” Amanda McMullen said. “What can you say to someone who does a selfless act like that from someone they don’t even know?”
Danielle McMullen received that transplant in October 2017.
“She was 100 percent donor cells,” Ben McMullen said. “She had been cured.”
But with the transplant came side effects.
“She had ulcers in her stomach and her skin broke out,” Ben McMullen said. “The poor little thing, she was blotchy purple.”
In the coming months, fluid developed around her heart.
“She was thriving up until December,” Amanda McMullen said.
In December of 2017, a stent was put in her heart.
“We came home for New Year’s Eve,” Amanda McMullen said. “It was bittersweet. Here we get to watch her and it was like we proved them wrong. She was supposed to die six months earlier. She never gave up.”
In the months that followed, Danielle McMullen continued to be in and out of the hospital.
“She had been out a total of 90 days,” Ben McMullen said.
Then in April, tragedy struck when Danielle McMullen stopped breathing and doctors were unable to revive her.
She passed away April 17, 2018, at the University of Iowa Stead Children’s Hospital in Iowa City due to unknown medical complications.
Her journey was both exhausting and frustrating for the McMullen family.
“She battled this disease and we just still don’t know exactly how she died,” Amanda McMullen said. “We were told so many times to tell your child goodbye. Dani proved them wrong so many times. She healed herself.”
Now the McMullens are trying to raise awareness for HLH.
Both said the disease can be hard to diagnose or even misdiagnosed.
“More research needs be done about the beginning stages of HLH,” Ben McMullen said. “A lot of children have died from HLH, not knowing it exists.”
Ben McMullen advised parents in similar situations to be mentally prepared.
“If they are diagnosed with it, you can always pray for the best, expect the worst,” he said. “Be mentally prepared, mostly. There’s going to be lots of ups and downs.”
Amanda McMullen said Danielle McMullen was determined throughout.
“Dani fought for so long in her little life,” Amanda McMullen said. “Dani made our life better. She was our little chunky monkey.”
Amanda McMullen said she wants to help prevent other families from having to experience what she did by raising awareness.
“We don’t want any parents to have to go through what we did,” Amanda McMullen said. “We want every kid to be able to have a life.”
Dani’s story is included in a book titled “There Is Hope Here: Stories of a Rare Blood Disorder” by Kelly J. McCleary. Books are available for purchase on Amazon.
Proceeds from the sale of the book are donated to HLH research and HLH families.