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13-month-old boy gets help with rare disease

Posted at 3:55 PM, Dec 25, 2019
and last updated 2019-12-25 19:20:00-05

COLLINSVILLE, Okla. — Brooke and Fred Jensen have lived in Collinsville for almost a year, they say it's been hard since the beginning.

"Definitely a roller coaster. Especially because we have had three healthy babies," Brooke said. " We knew something wasn't right. He's a really happy baby, so it also feels really unfair. Like he's so happy."

The Jensen's son Aksel is very active, although he's struggled with going to the bathroom for a while.

They thought it was normal because breastfed babies can go up to seven to 10 days without pooping, but things have gotten worse.

"Super hard, especially on the days where he was super backed up because you know he was super uncomfortable," Brooke said. " You just feel. I just feel more guilt for him, you know."

After months of doctor visits, they found a doctor in Washington, D.C.

"Now we will have answers, so the surgery It will help. He should live a fairly normal life after this, but he may still have issues," Brooke said.

The Children's National Hospital's Chief Reconstructive Surgeon, Marc Levitt, agreed to help them.

"Definitely a sigh of relief," Brooke said. " Just knowing that a doctor knows enough about it, cares enough about it. And he will have some relief too."

And after the surgery, they can take a break.

"Trying to work full time and take care of him, and the other three kids. With everything he does, it keeps us busy," Frederik said. " He keeps us busy, it's a lot to take in."

Frederik says things have been tough, but he's just happy things will turn around soon.

"Just seeing her and how emotional she gets," Frederik said. " I try to be the strong one, but yea, it's hard. Seeing a baby that has no control over anything. No control over that."

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