Fort Pierce family packing up large family to be closer to son with rare disease

Posted at 8:59 PM, Jul 19, 2017
and last updated 2017-07-20 05:49:20-04

A Treasure Coast family is willing to uproot their entire life to be with their little boy fighting a rare disease.

Max Lewis suffers from a rare autoimmune disease, causing countless infections in his body. As a children's hospital in Orlando works to save him, his family is doing everything they can to be near him.

Most of Max's short life have been a fight to survive.

"It's traumatizing to see your child go through this sort of thing," said Max's mother, Jillian Lewis.

The two-year-old has been in and out of hospitals since three months old, battling infections and pneumonia. He visited several hospitals across South Florida from Joe Dimagio Children's Hospital in Fort Lauderdale for a spinal tap and tests, to Lawnwood Regional in Fort Pierce for hip surgery to treat an infection and pneumonia.

"It was really emotional, really difficult because we don't have answers," said Craig Lewis, Max's father. "He doesn't talk, he can't tell us what's wrong with him."

Recently, the family took a trip to the Kissimmee area but it had to be cut short because Max wouldn't eat. He also had a high fever and a sudden infection on his knee. He was rushed Nemours Children's Hospital in Orlando.

"We're wondering if his immune system is not up to snuff," said Dr. Kenneth Alexander, Chief of Infectious Diseases at Nemours. "Any time you've got a child as complicated as Max, you've got a lot of people involved. When Max came to us, he was critically ill. He could've easily died from the infections that he had."

Dr. Alexander said Mac suffers from three problems that created a domino effect on his immune system. With a weakened system, he developed an infection from the bacteria, streptococcus pneumoniae. From there, doctors say he became diagnosed with atypical HUS. It's a rare condition that causes the blood cells to destroy each other as they move through his body.

"Sorting out an immune problem during an immune infection is very difficult. It's a little bit like playing chess during an earthquake, everything is moving and shaking," said Dr. Alexander. "We he came in, we thought 'my heavens, this is a young man that's been in the hospital now five times. We've got work to do.'"

With a collapsed lung and other complications from the infection, the next step for doctors is to get him stabilized. There are kidney doctors, immunology doctors and other specialists assembled to help Max.

"We'll begin to pick apart his immune system to see if we can identify where the problem is," said Dr. Alexander.

But Max's family lives and works in Fort Pierce. They've been making the drive to stay close to the hospital and have had to make the sudden decision to pack up the family and move to Orlando. It won't be easy -- the Lewis' have seven young children total.

"I feel really comforted knowing that he's getting best care possible here," said Jillian. "We're trying to focus on getting him better so we can be together again."

Despite the bandages and machines, Max is still in good spirits. When WPTV visited him in Orlando Wednesday, he was happily eating lunch, watching Toy Story and playing with his stuffed animals and toy truck.

"I don't think I would have that in me with all the pain and everything to still seem to find a smile," said Jillian.

Right now, the only thing working to help max is a special drug called Soliris.

"Max is completely turned around. He took the medicine and within two hours he was sitting up smiling," said Craig. "Last couple of days he's been doing really great."

It's known by doctors as the most expensive drug in the world at $50,000 a dose. Luckily, the Lewis' insurance was able to cover the first dose and the drug's manufacturer is even donating a second dose to help Max.

"What happened to Max is kind of like dominoes," said Dr. Alexander. "It's as if his immune cascade got turned on and he began to self-destruct. What Soliris does is turn off that self-destructive auto-immune pathway. The problem is, it was invented for the treatment of a very rare disease and as a consequence, is very expensive."

Dr. Alexander said the drug is saving his kidneys, preventing a possible kidney transplant and more issues in the future.

Max's dad is now looking for work in Orlando. They hope to move as soon as next week.

"It's very important that we stay close to this facility because they don't want him to fall through the cracks again," he said.

A GoFundMe account has been set up to help the family of nine move their life to Orlando, with hundreds across the Treasure Coast donating and sharing on social media.