A birthday wish that Daniel Muniz made when he turned five-years-old best describes the type of boy that he is.
"He wished for his whole family to be together," said Daniel's mother Stephanie Gonzalez. "He didn't wish for toys or anything. He's the type of kid who'd rather sit on the couch with his family and watch TV than play with his toys and do anything else. He's just a loving, loving kid with a very big personality."
Gonzalez, of Upper Deerfield, New Jersey says she and her husband suddenly noticed a change in that personality last August.
"He complained of a headache and he wasn't acting like his normal self," Gonzalez said. "The next day he got very sleepy. Later on, throughout the night he kind of stopped talking and he always talked. He kind of had a confused look on his face and was staring into space as if he didn't know what was going on. Then we immediately took him to the emergency room."
A few days later Gonzalez heard the news. Her six-year-old son was diagnosed with a rare form of Acute Disseminated Encephalomyelitis (ADEM) called Acute Necrotizing Encephalitis (ANE). ANE produces inflammatory lesions in the brain and spinal cord. The form that Muniz suffers from is extremely rare and only seen in about 2% of ADEM cases. ANE destroys brain tissue and leaves the patient unable to walk, talk or perform basic functions.
"From what I've read, there has only been four to five cases in the United States, 10 to 12 in Europe and 230 in Asia," Gonzalez said. "They don't have a lot of information on how to treat the disease so the doctors had to do a lot of research and go through a lot of trials to find out what they can do to help my son."
Danny received treatment at AI DuPont Hospital in Delaware. The initial news doctors gave Gonzales following an MRI scan wasn't good.
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"They felt he wouldn't really improve because they believed he had permanent damage in the part of his brain that controls movement and basic function," Gonzalez said.
Gonzalez and her husband also had to deal with the financial burden.
"There are medical costs and equipment costs," Gonzalez said. "He needs a wheelchair, bath chair and a hospital bed. Our insurance only covers 50 percent of the cost. I'm not working and my husband is the only one working. It's been a struggle to pay our bills, pay rent and be at the hospital all the time. The hospital is also an hour away."
After about a month, Gonzalez told Danny's preschool teacher Donna Harrington about his condition. She never imagined what Harrington would do next.
Harrington, Daniel’s kindergarten teacher Megan Gannon and Harrington’s teaching assistant Terri Bodine started a website for the young boy, raising awareness and collecting money as well as food for the family.
“He is a gorgeous child and he just radiates happiness and warmth and love,” Harrington said. “Because of that the community has really come together for him.”
Gonzalez says the love shown for her son brought tears to her eyes.
"I cried," she said. "When they did all that for us we were in shock and surprised. We're so grateful and we can't tell them thank you enough. All we ever asked for from anybody was prayer. We never expected all this outpouring of support from the community."
While Danny is still unable to perform basic functions and remains hospitalized, Gonzalez says the young boy has defied expectations.
"He's getting better and he's out of critical care," Gonzalez said. "Every week we feel like we see a new improvement in him and the hospital has been wonderful. With the intense rehab he's gone through every week we've seen small steps. He's starting to move his head, keep his eyes open, move his eyes around and communicate with a little bit of noise. His neurologists are really surprised because according to his MRI scans, he really shouldn't be doing these things."
Despite the improvements, Gonzalez knows there's a long road ahead to recovery.
"We know it's gonna take at least a year for him to get anywhere," she said. "We're prepared to take it one day at a time with him."
Yet despite the challenge, Gonzalez takes solace in the fact that an entire community is in the young boy's corner.
"I still cry over it," she said. "It's just amazing to know people who really feel for our son and feel for our family. It's really been wonderful the support that we've had. We don't feel alone."
Donations for Danny are being collected through September 30. To donate, visit the fundraising website. You can also email Harrington at harringtond@utds.org.
