Help fund Violet Charlesworth's Medical Expenses

Violet Lovina Charlesworth was born on April 10th, 2019 at full-term. Violet couldn’t take her first breath and was immediately rushed into the NICU where a team of five nurses and respiratory therapists were able to save her life.

Violet was put on a ventilator for the first 24 hours and then was moved to forced air CPAP. The doctors could not determine the cause but decided to give violet antibiotics anyway. The doctors and the nurse practitioners thought Violet was born with pneumonia, respiratory hypertension, and hypotonia, but the cause was still unknown. On April 12th early in the morning, a nurse practitioner came in and informed Kara and Brian that Violet had been given some surfactant for her lungs and her poor little body couldn’t handle it. They started making plans to do an emergency life-flight to Ogden Regional or Primary’s. Luckily, Violet’s condition improved again.

Over the next few weeks, Violet began learning how to eat and was only on a little bit of oxygen, but it was clear that something was still not right. The doctors began doing a gamut of tests from MRI’s, to chest ultrasounds, to muscle disorder testing, and genetics. All tests were coming back normal. After a month, and at a loss of what to do, the doctors at Davis Hospital decided it was time to send Violet to Primary Children's Hospital in Salt Lake City.

Violet was life-flighted on May 8th, just two days shy of her one month birthday.

The doctors and nurses at primary children's worked astoundingly fast. The only severe thing they could deduce was that Violet had hypotonia and some features that could indicate a genetic syndrome. These slight features were dismissed by the geneticists since some of the features could be found in Brian and Kara’s family and the genetic testing came back completely normal. The geneticist said there was one more test they could do called a microarray.

After five weeks in the NICU, Violet was weaned off oxygen and sent home on a nasogastric tube to wait on test results.

Only five days later, the geneticists called with a diagnosis. Violet has a rare genetic disorder, so rare it doesn’t have a name. It’s called 14q 32.31 - 32.33 deletion syndrome. While about 1 in a million is born with a 14q deletion, As far as we know, there are only three other children with this exact deletion, and Violet could be the only girl.

Prior to her birth, Violet’s family were preparing to move to London for her dad to pursue his masters degree. Brian had made a contract to leave his company just two weeks after the birth of Violet, with plans to move to London shortly after. With Violet’s diagnosis, Brian and Kara have decided to stay in Utah and try to search for employment as quickly as possible.

Brian and Kara cannot financially absorb the 5 weeks in the NICU, life-flight, expensive medical testing, out of network medical bills, and future medical costs including physical therapy, feeding therapy, and medical procedures.

Anything you can give to assist them through this very difficult time would be appreciated more than you could know.



Watch this video to see more of Violet's story.