STAR, IDAHO — 4-year-old Mateus Hemmingson was diagnosed with Charge syndrome after birth. Now due to complications with surgeries is now in an ICU in San Diego where his parents travel to take care of their child.
- Mateus is a 4-year-old boy with Charge syndrome.
- The family hopes to be reunited by Christmas.
- To donate and help the family, click here.
(Below is the transcript from the broadcast story)
Christmas gifts can come in all shapes and sizes. But, for the Hemmingson family in Star, this holiday season is all about getting their son back home from the ICU in San Diego. I'm your Star neighborhood reporter Alexander Huddleston learning more about the medical nightmare keeping their family separated by several states.
"I feel like the future is a lot of unknown," shrugged Danielle Hemmingson.
The feeling of not knowing is what Hemmingson has felt every day for the last four years.
Hemmingson continued, "We take it a day at a time. Some days are better than others. Some weeks are better than others."
It all started when Hemmingson’s second child Mateus was diagnosed with Charge syndrome two months after being born 11 weeks premature
"It happens in 1 in 10,000 babies making it a very rare syndrome that impacts all of his senses. So when we got told he was diagnosed, it was hard," explained Hemmingson.
Mateus spent 4 months in the NICU before he could come home. From then on, his parents and doctors worked closely to support him through all sorts of therapies until this year.
The mother proceeded, "Mateus went to have heart surgery in Cincinnati back in August. It was a 13-hour surgery with some complications."
Hemmingson says after what was his 5th surgery, Mateus' vocal cords became paralyzed. He and a team of ICU doctors were then airlifted to a hospital in San Diego.
"He was intubated and sedated and paralyzed for two months. He is now on a bypap mask still struggling to breathe," added Danielle.
Danielle and her husband Luke have been taking turns flying down to see their son. But with medical bills stacking up, the constant flights became too expensive. So, they had to make the decision to keep Danielle at home with the couple's other two kids while Luke watched over Mateus. But with Luke's medical leave from work running low, they're running out of time.
Sitting up Hemmingson said, "If my husband doesn't go back to work next month, we are going to lose our insurance. There are just a lot of medical bills."
Danielle showed me over a million dollars in medical bills. Not including the bill for the airlift.
"Every time I go get the mail I get a stomach ache just from getting that bill. It just gives me so much anxiety," said Danielle.
Support from the star community is making a difference. Danielle says Mateus' teacher is helping to share a GoFundMe to help cover the rising medical costs.
As for Mateus' siblings Lucas and Jack, it's hard being away from their brother.
Solemnly Hemmingson added, "They often ask when he is going to come home. My 6-year-old was very sad Mateus was not here for Halloween. He couldn't understand that."
"I know he's a fighter. he is the strongest boy that I know. I know he is going to come out of that. I just don't know how long it's going to take. But I know he will. I have no doubt in my mind," said Danielle through the tears.
