Extraordinary Hope for Levi

At just 4 years old, Levi Bounphaseuth already lives his life to the fullest - with joy, exuberance and imagination. There was the era when he claimed to actually be his favorite superhero. Then there was the one when he pretended to be a chef, cooking up feasts in his play kitchen. And his builder phase, when he was busy constructing masterpieces with magnet tiles. Today, Levi's favorite hobbies are drawing, having dance parties with his little sister, and - as always - charming everyone he meets.

"Levi's never met a stranger. Everyone who meets him falls in love with him," says his mother, Linh Ta.

Levi is a thriving, happy little boy today because of his siblings and because of Arkansas Children’s Northwest (ACNW), where Levi receives the monthly lifesaving treatments he needs to survive.

An Early Diagnosis

Levi has alpha thalassemia major, a hereditary blood disorder that, without intervention, is nearly always fatal before the baby is even born. The condition can cause severe anemia, enlarged organs and heart defects.

At just 3 months old, Levi received his first blood transfusion at ACNW in Springdale, just a few miles down the road from the family's home in Lowell. He's had more than 50 since, requiring one every four weeks to survive. Without these lifesaving treatments, Levi's red blood cells would fail to carry essential oxygen to his tissues.

For now, monthly hospital visits are Levi's normal, and Arkansas Children's is his "second home." He especially looks forward to seeing all the nurses, who have become friends.

But it was a great loss that gave Levi a chance at life. Eight years ago, Linh and her husband, Steven Bounphaseuth, had their first child, a baby boy they named Liam. His condition wasn't clearly understood by their medical providers at the time, and he passed away from complications. "I try not to think about it too much," says Linh. "I wouldn't be where I am now or have this purpose if all that didn't happen."

When Linh became pregnant again, she and her husband insisted on an amniocentesis - a test which helps detect birth defects and genetic anomalies. Twenty-four weeks into the pregnancy, Linh's unborn baby, little Levi, was diagnosed with alpha thalassemia major.

Though Levi didn’t know it yet, his brother Liam’s life made his own possible.

Right Place, Right Time

Though Steven and Linh had some answers, Levi's survival wasn't guaranteed. Within a few days of learning Levi's diagnosis, Linh was on a plane to join a clinical trial at a San Francisco children's hospital, where she would travel back and forth until Levi was born.

"Somehow everything was just the right place, right time," says Linh, noting she almost missed the window for inclusion in the trial. The study aimed to prove a mother could serve as a stem cell donor for her child diagnosed with alpha thalassemia major. During this time, Levi received in utero blood transfusions, and Linh underwent bone marrow harvesting for stem cell collection.

After his birth in California, Levi remained in the hospital’s neonatal intensive care unit for a month before returning home to Arkansas, where he would begin regular blood transfusions at ACNW.

When Levi was about a year old, Linh learned she was pregnant again. Nine months later, she gave birth to a healthy baby girl, Skyler.

Before Skyler was born, an amniocentesis revealed two crucial details. First, she was a carrier of the blood disorder, but thankfully didn't have the condition. Second - Skyler's bone marrow was a perfect match for Levi.

“I ended up giving birth to Levi’s cure,” Linh says.

Consistency and Other Gifts

Levi will eventually receive a stem cell transplant from his sister. Until then, he'll continue to need his monthly transfusions at ACNW. Steven and Linh are grateful their son can receive care without traveling long distances.

ACNW also provides continuity, which is invaluable to the family. Levi had the same nurse for three years who, without being asked, reworked her schedule to continue caring for Levi. "She definitely was his favorite - he always looked forward to seeing her," says Linh. Levi's other favorites include his doctor and many nurses from the infusion center and the outpatient lab. He also loves the gift shop, where everyone knows him by name.

"I know what to expect," says Linh. "There's a routine, and kids thrive off routine. For me, that's the biggest thing. I have that comfort."

As a grateful parent and a volunteer board member of the ACNW Auxiliary, Linh knows first-hand how donations to the hospital impact children and families in the northwest Arkansas region.

"Not only is Arkansas Children's Northwest taking care of the kids in this community, there are also people coming from Oklahoma and the surrounding areas that don't have a children's hospital … they need care as well," says Linh. "It's great if you can donate because you can see where your money is going. You can see the need for growth."

Levi receives lifesaving treatment at ACNW because of you. Thank you for giving Levi - and children like him - the gift of expert pediatric care close to home.

Thank you for providing joy, courage and expert pediatric care for children like Levi!