Baylor’s story began quietly in a pediatrician's office when, at just five weeks old, a heart murmur was detected during her one-month checkup. This led to a whirlwind of tests, including an Echo, EKG, and X-ray, revealing a severe heart condition. The doctors delivered heartbreaking news: "There is nothing we can do for her. It could be weeks or months. Just take her home and love her as long as you have her."

Despite this devastating prognosis, Baylor’s parents refused to lose hope. They found support through Williams Syndrome Facebook groups and were introduced to Dr. Tom Collins, a renowned expert. His advice—"Let her grow"—offered a glimmer of hope. Baylor thrived, reaching milestones and blossoming into a spirited toddler.

At almost three, the family moved to Florida, and Baylor had her first Williams Syndrome clinic visit at Nemours Children's Hospital, where they were told another heart catheterization was necessary. With anesthesia being risky for children with Williams Syndrome, Baylor's parents hesitated, but after consulting with their team, including Dr. Collins and Dr. Martin (their Nebraska cardiologist), they were encouraged to move forward. The decision led them to Dr. Frank Hanley at Stanford, who performed Baylor’s aortic arch repair in October 2024. The recovery, which was expected to take two weeks, turned into a nearly five-week hospital stay. Finally, just before Thanksgiving, Baylor was strong enough to fly home and reunite with her older sister, Baker.

But the journey doesn’t end there. In May 2025, Baylor will undergo a 20-hour surgery to reconstruct her pulmonary arteries under the care of Dr. Hanley once again, who pioneered the procedure. This surgery, while incredibly risky, is her best chance for survival. Baylor’s parents are terrified but remain focused on what they can control— and leaning on their unwavering support system.

A key part of this support is Dr. Algaze, Baylor’s Stanford cardiologist, who has been a constant source of encouragement. Always available for texts, calls, or advice, Dr. Algaze has empowered Baylor’s parents to advocate fiercely for her care. As Baylor prepares for this next challenging surgery, Dr. Algaze’s steadfast support continues to give them strength.

Baylor’s parents know the road ahead will be tough, but they’re ready to face it with the same courage that has carried them through the darkest times. With their doctors and the support of family and friends, they will continue to fight for their little girl who defies the odds with every breath she takes.

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Support the Kimura Family 💖

If you’d like to make a monetary donation, please send it via Venmo to @NikkiKimura.

To learn more about Baylor's inspiring journey, visit her GoFundMe page!

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What is Williams Syndrome and what does 7q11.23 mean?

Williams syndrome is a condition caused by missing pieces of DNA on chromosome 7, specifically at the 7q11.23 spot. This missing DNA affects how the body works and causes certain problems.

• Missing Genes: People with Williams syndrome have a piece of DNA missing that affects about 26-28 genes.

• Common Problems: This can cause heart issues, problems with how the body grows, and learning delays. People with Williams syndrome often have very friendly personalities, but they may struggle with learning and have trouble with math and other skills.

• Heart Problems: One important gene that's missing helps make a protein needed for blood vessels. Without it, people often have problems with their heart and blood flow.

So, 7q11.23 refers to the spot on chromosome 7 where the DNA is missing, and this missing piece causes the symptoms of Williams syndrome.