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Twins Times Two Leads Little Rock Family to ACH

ACH Patient Stories - Matthew KamangaIt was not the news that Kelli Kamanga expected. Her home and heart were full with five adventurous toddlers, including a set of twins, and she was joyful to be pregnant for the fourth time.

“When the doctor rolled the ultrasound transponder over my belly and said there was a second baby – again – I just couldn’t imagine it,” Kelli said. “Your mind just goes to the sleepless nights and all the hard things about healthy twins. You just don’t think you have it in you again.”

Sure enough, Kelli and her husband Dean would soon be welcoming their second set of twins in a row. The babies would join David and Deanna, then a year old, and big brothers Jeffery, who was 2, and Isiah, 3, and Michelle, the oldest at 4.

The family did everything they could to get ready for the newest additions.

“We had four healthy babies at that point, and my final pregnancy was pretty typical,” Kelli recalled. “We felt like we were as prepared as you can be.”

The surprises continued when they greeted their new sons, Mark and Matthew. It turned out that the babies had twin-twin transfusion syndrome while Kelli carried them. That means that Mark, who was born at 10 pounds, 5 ounces, was getting most of the nutrients Kelli consumed, while Matthew, who was just 5 pounds, 10 ounces, was less nourished.

Tiny Matthew was transferred to Arkansas Children’s Hospital hours after his birth. The trip from a Little Rock hospital to ACH would begin a years-long journey to bring the boys to good health.

Matthew was eventually diagnosed with cerebral palsy. In addition to his lengthy stay in the Neonatal Intensive Care Unit at ACH, he would require heart surgery and extensive physical, occupational and speech therapies in the years ahead. He and Mark both have some hearing loss, as well.

“Since the day they were born, our family’s entire existence has been about creating a life where they could overcome whatever deficits they faced,” Kelli said. “I can remember doctors telling me early on, ‘Matthew may walk.’ And I said, ‘That’s a lie. Matthew will walk.’”

Today, Matthew and Mark are 8 years old, and they are well known all over ACH. Matthew receives physical and occupational therapies every week, and both boys are enrolled in recreational swim classes at the hospital, as well. Even before he started working on his balance and gait issues at ACH, Matthew was enrolled in therapies at the Allen School in Little Rock, until he started pre-K.

Today, Kelli brings all the children – now ranging from 8 to 12 years old – to wait at ACH while Matthew completes his therapies each week.

“We tell our kids, if one of us is in trouble, all of us are in trouble,” Kelli said. “If it was any of the others, they’d want the same thing. They’re helping him today, but one day, he may be helping them.”

The Physical Therapy team at ACH says the support of Matthew’s parents, brothers and sister has helped Matthew make tremendous strides.

“His older siblings work with him on therapy stretches, and I’ve watched his sister help him put on his orthosis,” said Stephanie Zimmerer, Matthew’s physical therapist.

When Stephanie first began working with him a year ago, Matthew would fall as often as four times a day. He doesn’t use his left side much, a result of the cerebral palsy. But his balance is improving and he walks without assistive devices, though he wears an ankle foot orthosis.

Matthew loves splashing around in pool classes with Mark, and their relationship motivates Matthew to improve his walking.

His personality also plays a big role. Matthew occasionally gets frustrated during therapies, but is always determined and happy.

“You will not come to a therapy session, a pool session, anything in our department, without hearing Matthew’s laugh,” said Jessica Mabry, who teaches his pool class. “That giggle is Matthew’s signature.”

Kelli Kamanga says that Matthew couldn’t have surmounted so many obstacles without the team at Arkansas Children’s Hospital.

“ACH is an extension of our family,” she said. “From the greeters at the front door to the therapists who spend so much time with us, they all help take care of my kids.”

Matthew started classes at Forrest Heights STEM Academy in Little Rock this fall, where Kelli began her first year as a fifth grade teacher. They’re both excited about the future.

“I have a goal for Matthew. I want him to be able to walk down the aisle when he gets married without any assistance,” Kelli said. “I want to see him 100 percent independent.”

Learn more about the Neonatal Intensive Care Unit at Arkansas Children's Hospital.