Loxahatchee 5-year-old fighting rare disease and still encouraging others

Posted at 7:31 PM, Dec 01, 2016

It's hard to stay positive while in and out of the hospital facing a life-threatening disease, and even harder dealing with it while being only five-years-old.

But for one Loxahatchee boy, it's become a way of life.

Five-year-old Dylan Lumm struggles with a rare, deadly disease called portal hypertension. It causes trouble with the way blood flows through his digestive organs.

In mid-November, doctors had to rush to save his life.

"He basically bled out," his father, Mike Lumm, recalled. "More than half of his blood, he threw it all up."

Dylan was admitted to Holtz Children's Hospital in Miami, where he was given five blood transfusions and had his spleen removed.

He'd undergone a similar situation a year earlier, requiring six blood transfusions and a shunt put into his liver.

As a result, he has a weakened immune system, and for now, he and his dad can't leave their home.

"I've been out of work for the last couple of months now," Lumm said, "Because he can't really be around any other people or be out anywhere."

Dylan is currently dealing with taking care of a post-surgery scar held together by more than 50 staples. He says the medicine he has to take is the worst part, however.

Lumm says his son will have to take penicillin every day for the rest of his life to fight off bacteria. He also can't risk being exposed to a lot of germs. If all goes well, however, he will grow stronger and be able to live a somewhat normal life.

For now, Lumm says his son's positive attitude is keeping the whole family strong.

"It's terrible to see him in the hospital, and he's been really good about the whole thing," Lumm said. "He hasn't really cried much or complained about it too much."

Lumm says he's ready to do anything it takes to give his son a shot at a healthy life.

"He's spent the last two years in and out of the hospital, basically fighting for his life through these surgeries," Lumm said. "I mean nobody's sure that it'll help. But I just want him to go and experience as many things as possible, just to see as many things as he can."