Parents of Baby Born with Rare Eye Defect Seek Public’s Help

Navajo Times | Adron Gardner
Branson Johnson holds his daughter Asuna Charlie Johnson during a fundraiser to assist with treatment of her Fetal Persistent Vasculature Syndrome at the Knights of Columbus in Gallup on March 21.

Published March 26, 2017

GALLUP  Branson Johnson held his 5-month-old daughter Asuna Charley Johnson and continuously kissed her chubby cheeks.

“She loves to jump, she loves to bite,” said Johnson, 21, as Asuna looked straight ahead. “And she has very strong, chubby legs. They look like dinner rolls.”

Asuna was complacent and was enjoying her dad’s attention. You would never guess that this happy baby was born with a rare congenital eye defect known as Fetal Persistent Vasculature Syndrome in both eyes, leaving her without any vision.

“I cried,” said Johnson when he found out about his daughter’s eye defect. “It was the scariest thing. Persistent Vasculature Syndrome is very rare to the point that only two doctors are able to do surgery.”

In hopes to retain any vision she may have, Asuna would need to go through a certain form of eye surgery. So, Branson, along with Asuna’s mom, Jcynthia Lee, will have to travel to Royal Oaks, Michigan where their daughter will be able to get the medical attention she needs.

With only two hospitals in the United States that perform this certain type of procedure – one being the University of New Mexico Hospital, which only treats adults, and Beaumont Hospital in Michigan being the other – the young parents and their families have been hosting fundraising events and activities to help cover travel expenses to get to Royal Oaks.

And on Tuesday, they held a Navajo Taco sale at the Knights of Columbus in Gallup.

Branson explained that with the help from Medicaid, his cost to get to Michigan is covered, but Lee has to buy her own ticket. Although, he currently works part-time at Home Depot, Branson is still worried about the prices for hotel stays, food, a rental car, and other unforeseen expenses they may encounter on this trip.
“I’m scared – I’m terrified. I haven’t slept,” said Branson about how he is feeling regarding the upcoming surgery. “But, there’s a lot of people helping out and I’m thankful for them.”

As Asuna’s mother, Lee said she detected something wasn’t right when her daughter had a hard time focusing her eyes.

“She kept looking up and side ways,” said Lee. “I went to get her checked and they said ‘It’s OK, it will become normal.’ Then her follow up came and her main doctor saw it and referred us to an eye doctor.”

Lee said that Asuna has an older brother, T.J. McDonald who is 4 years old, and as an older brother, he is very attentive to his sister and helpful to his mom.
“T.J. likes to play with her and he wants to help change her clothes and her diapers,” said Lee. “When Asuna’s not playing with him, she likes playing with her toys, listening to sounds, and sucking on her fingers. She bites hard.”

Lee wasn’t the only one who noticed something was amiss with her daughter’s vision. Ophelia Johnson, Branson’s mother, said she had never seen a baby experiencing eye problems similar to Asuna’s before. Johnson works in the eye clinic at the Gallup Indian Medical Center.

“Of all my years working there, I’ve never seen a baby brought in like that,” said Johnson. “Adults, yeah, I have. But, babies? I’m heartbroken.”

Like Lee, Johnson is questioning why the pediatrics at GIMC did not catch the problem sooner, especially after Asuna was taken in specifically to have her eyes checked. But, leaving that in the past, Johnson is now worried for her granddaughter’s future.

“It’s her future that really broke me up,” said an emotional Johnson. “How are we going to take care of her? She will need special care. It really tore me up and I told my son, ‘No matter what, you’re going to have to get her educated.’”

Johnson also said she told her son to ask the doctors questions and learn about Asuna’s defect so he could share the information to those out there who may find themselves in the same situation and to also raise awareness.

As a young father, Branson is proactive and has conducted research on potential costs he and Lee might encounter while in Michigan. The surgery is set for March 28 and they are to return on April 4.

Branson’s aunt Villena Johnson–Chewey had started a Gofundme page for anyone wanting to donate to the young parents. So far there has been $1,145 raised of the $3,000 goal.

To donate, visit gofundme.com/3i7shvk.

“We are pulling through this. I wouldn’t be able to do this without my family’s support, financially and especially emotionally,” said Branson. “It’s heartbreaking. It’s sad. It makes you appreciate how lucky you are to be healthy everyday.”

Editor’s Note: This article was first published in the Navajo Times. Used with permission. All rights reserved.

The post Parents of Baby Born with Rare Eye Defect Seek Public’s Help appeared first on Native News Online.

This BBSNews article was syndicated from Native News Online, and written by Arlyssa Becenti. Read the original article here.