On a Tuesday morning last fall, Kim Fischel noticed her son Sean wasn’t his usual self. Normally, the first-grader would pop out of bed and start getting ready for school, but this day he was sluggish. “I could tell he didn’t feel good, but he never complained,” Kim says, “never, ever, ever.”

On most days, Kim adds, “he would get up on his own, get dressed, brush his teeth and come down smiling, ready for breakfast. But that morning, he wasn’t awake by the time he normally would be, so I went upstairs and touched his little arm and said, ‘Sean, time to wake up.’ He didn’t open his eyes, he just smiled and threw his skinny arms around my neck and gave me a huge hug. Then he woke up and slowly got dressed.”

Later that day, the school nurse called Kim to say Sean had a fever. She picked him up from school, brought him home and the two spent a “sick day” together.

A few days passed, and Sean didn’t get better. His fever spiked to as high as 105 degrees and Kim, her husband Brian and pediatricians tried to figure out what was wrong. At an ER visit only three days after the school nurse’s phone call, Sean went into septic shock. (Septic shock is the body’s life-threatening reaction to some infections. It causes a person’s blood pressure to lower drastically.)

“It’s such a hard memory to think of, because he was in so much pain. His little body was just shutting down. His fingers and toes started to get purplish, and his lips were so big and inflamed. They had to intubate him. Within two hours they stabilized him so he could be flown to CHOP.”

At CHOP, the 6-year-old was admitted to the ICU. He was diagnosed with HLH (hemophagocytic lymphohistiocytosis), a rare autoimmune disorder that attacked his body. He stayed in the ICU for 100 days until, sadly, he passed away at the beginning of this year.

Because HLH is such a rare disease, statistics of its prevalence are hard to come by. One Swedish study says it is diagnosed in one in a million people. It was typically found in infants and children, but the number of adults with HLH has slowly increased. In total, less than 200,000 people have had the disease. Although it is not a cancer, part of its treatment is chemotherapy along with steroids and other drugs. Sometimes a bone marrow or stem-cell transplant is needed. Despite treatment options, once diagnosed, the survival rate is under 50 percent.

For Sean, his 100 days in the ICU were a battle that never got easier. Soon after he arrived at CHOP, Sean suffered a cardiac arrest and was revived, but remained on life support for two weeks. He began chemotherapy while still on life support, had dialysis for three weeks and underwent an endless number of surgeries and invasive procedures. When his blood circulation decreased, Sean had to have nine of his fingers amputated as well as both legs below the knees.

“It was torture, but we felt fortunate that we still had Sean. We were so thankful he was alive,” says Kim. “We were going to work through this.”

But about a week before Sean’s passing, Kim says she sensed a decline. “As a mom you feel these things. We were connected. He was the most cuddly, sweet little boy, and I knew he was slipping away. Two days before he died, he looked at me with little tears rolling down his cheeks and he said, ‘Mommy, I just want to go home.’ I put his little hands on my face and I said, ‘Seanie, I want more than anything in the world to take you home. You just need to keep fighting and be strong.’ But I think that was his way of telling me that he was going to be home with God.”

In the months since, the Moorestown family – Kim and Brian have two other children: Connor, 10 and Sydney, 9 – has been adjusting to their new family of four. “The big difference is they lost their brother, where my husband and I lost our son. Sean and Connor shared a room, and Sydney always took care of Sean. If Sean would hurt himself, he would go running to Sydney, and Sydney would cuddle him. It was such a sweet relationship between the three of them. They never looked to me for entertainment, because they had each other. Connor and Sydney are so close in age, and Sean was the glue between them. But we’re working on our new roles.”

The family is also faced with painful reminders that can creep up in the simplest of places, like in the kitchen. “I had to get rid of the kitchen table. It was a round table with five chairs, and I remember buying the fifth chair when Sean was born. Having that reminder in the house every day was too painful. There was always that fifth chair that was empty, so we got a bigger kitchen table with six chairs, so we can invite friends in. We’ve been having my family in a lot, and my husband’s family. Some things in the house I won’t change, because they are part of memories I couldn’t possibly lose.

“I know this is a loss that we’re going to feel forever, unfortunately. I think the parallel I draw is the pain is part of our fabric, and we wear it each day. Some days it’s going to hurt and some days, we’ll wear it a little bit better and it won’t hurt so much. But it’s always going to be part of our fabric.

Kim is now focusing much of her time on helping to raise money for the CHOP researcher who studies HLH. Donations from fundraising events have come to her from all over, even from people she’s never met.

“In May, a boy from Pennsylvania who we don’t even know donated $10,000. Apparently, he holds a golf tournament every year and chooses a charity to donate the money to. He heard Sean’s story and chose us. He’s 14 – to be so altruistic at that age is just wonderful.” Sean’s wrestling club organized a wrestling tournament that brought in $20,000, and his summer swim team raised another $20,000 at its annual swimathon.

“We never expected people to be as giving as they have been,” Kim says.

Kim also plans to give back. She is about to start volunteering at CHOP as a parent speaker at orientations for new employees. “I’m hoping that with Sean’s story I can show how much their actions – no matter what their job is – affect quality of care. If I dropped my keys and the security guard picked them up, that meant a lot. When the lady from environmental services came in and asked me how Sean was doing, that had an impact on me. People are at their worst in the hospital, so every little bit counts. I want to tell them how much all of that meant to me.”

Raising funds for HLH and working with the hospital are small comforts as the Fischels continue to cope with the loss of Sean. Kim says doing anything related to Sean helps keep him alive. “I don’t think someone is forgotten if they’re still in the hearts and minds of people,” she says. “I love being stopped on the street and having people tell me, ‘I knew Sean’ and then tell me a cute little story about him. He lives on through them.”