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Stories from the Heart: Beautiful Dream

Levi is a happy kid with a ton of life in him. He plays baseball, likes to ride bikes, and keeps up as best as he can with his younger brother and sister. Despite having Barth syndrome, he lives every day to the fullest and has tremendous support from those around him.

Levi was the first child born in the family; his mother was adamant about ensuring the health of her baby during pregnancy. She ate well, took prenatal vitamins, and took any necessary precautions. After being two days past her due date with very little movement, Levi’s mother knew something wasn’t right.

After Levi was born, they started to notice a lack of crying; he wasn’t latching to eat, and a oxygen saturation test read 80% when it should be 100%. A few more tests showed his heart was only functioning at 20%.

On April 1st, only a few days after his birth, the family was transported to a children’s hospital to better monitor his health. “This has got to be the worst April Fool’s joke possible,” Levi’s mother said. Their stay lasted around a month before genetic testing, and multiple different doctors’ opinions revealed it was Barth syndrome.

“When you have your first child, it’s like everything will be sunshine, roses, and butterflies… It was the opposite for us. It wasn’t like that dream, beautiful dream. It was more like a nightmare. I never thought I’d bring home a kid on oxygen and medication with syringes.”

It was a tough pill to swallow for the family. It was hard to accept the fact this little boy had this ultra-rare disease that would impact his life significantly. Levi’s mother wanted to ensure that he was seen as Levi, not Levi with Barth syndrome, so she decided to keep his diagnosis private.

At the age of two, Levi started to show improvements, and his mother decided to attend the Barth Syndrome Foundation’s biennial conference to finally meet the individuals that were there for her from the beginning of Levi’s disagnosis.

Barth Syndrome Foundation gave her the facts she needed to finally feel comfortable discussing Levi’s diagnosis with family and friends. Not only did Barth Syndrome Foundation provide Levi’s mother with the education about Barth syndrome she needed, but it also provided her with a community of others who know exactly what she is going through.

“I recall one time I felt hesitant to leave Levi to go to my best friend’s wedding. He was only one at the time and couldn’t talk. I turned to the Barth Syndrome Foundation family chat Facebook group and asked if I should go or not. It still makes me cry to this day, but I received an email from another Barth boy that said if Levi could talk, he would want you to go.”

After many doctors’ visits, insurance battles for medications, and physical and speech therapy, Levi is doing well. He still has a hard time doing the things he wants to do, but he does his best to push past his limitations. This boy, filled with life and happiness, won’t let Barth syndrome put him down, and he has a mother who goes to the ends of the Earth to ensure the best life possible.

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