s
s
Sections
Search
We don't just cover the North Bay. We live here.
Did You Know? In the first 10 days of the North Bay fire, nearly 1.5 million people used their mobile devices to visit our sites.
Already a subscriber?
iPhone
Wow! You read a lot!
Reading enhances confidence, empathy, decision-making, and overall life satisfaction. Keep it up! Subscribe.
Already a subscriber?
iPhone
Oops, you're out of free articles.
Until next month, you can always look over someone's shoulder at the coffee shop.
Already a subscriber?
iPhone
We don't just cover the North Bay. We live here.
Did You Know? In the first 10 days of the North Bay fire, we posted 390 stories about the fire. And they were shared nearly 137,000 times.
Already a subscriber?
iPhone
Supporting the community that supports us.
Obviously you value quality local journalism. Thank you.
Already a subscriber?
iPhone
Oops, you're out of free articles.
We miss you already! (Subscriptions start at just 99 cents.)
Already a subscriber?
iPhone
X

The "Follow This Story" feature will notify you when any articles related to this story are posted.

When you follow a story, the next time a related article is published — it could be days, weeks or months — you'll receive an email informing you of the update.

If you no longer want to follow a story, click the "Unfollow" link on that story. There's also an "Unfollow" link in every email notification we send you.

This tool is available only to subscribers; please make sure you're logged in if you want to follow a story.

Login

X

Please note: This feature is available only to subscribers; make sure you're logged in if you want to follow a story.

LoginSubscribe

Taylor Byrne, 20 months old, is just like any typical toddler.

Her large blue eyes light up at the sight of Mickey Mouse on the television in her living room. They also stare curiously at the sight of an iPhone, while her small, doll-like hands grasp at the device as she tries to figure out what it is. She laughs without a care in the world as she scales her living room couch, and the eyelids of those porcelain doll eyes droop ever so slightly as her usual naptime of 2 p.m. approaches.

Taylor is so much like any regular toddler; it is as if the oxygen tube that trails behind her disappears.

Two weeks after Taylor's birth, her mother Nicole Byrne, 22, realized something was not right with her daughter's breathing.

"I heard this panting and I thought it was our dog," said Byrne. "Then I realized that our dog was outside. It was Taylor who was panting."

Byrne also noticed Taylor's neck sinking in abnormally while she breathed.

After being transferred to the University of California, San Francisco Hospital and multiple CT scans, Taylor was diagnosed with neuroendocrine cell hyperplasia of infancy, also known as NEHI, a rare lung disease that results in fast breathing in children.

In addition, it was discovered that Taylor's airway is 60 percent smaller than average — a condition known as subglottic stenosis — as well as a cleft in her larynx.

The Byrnes are one of many families who have been supported by Petaluma's Carousel Fund — a partnership that Byrne said she wasn't even aware of at first.

"I don't know how he got our name, but somebody gave our name to Arnie Cohen (founder of the Carousel Fund)," said Byrne. "They've been nothing but amazing. I have nothing but good things to say about them."

Founded in 1987, the Carousel Fund is an all-volunteer, nonprofit organization that provides financial assistance to families with children suffering from life-threatening diseases, such as the Byrnes. The Carousel Fund hosts a Casino Night fund-raiser every year featuring different special guests donating their talents to the cause. This year, Grammy Award-winning singer Sheena Easton is scheduled to perform.

The Carousel Fund has helped Byrne and her daughter financially, including fixing Byrne's car and paying for the mother and daughter to travel to Chicago for the Children's Interstitial Lung Disease Conference this past June.

For Byrne, the most memorable part of their visit to Chicago was the chance to finally meet other families with children diagnosed with NEHI.

"At UCSF, she is the only patient with NEHI," Byrne, a student who wants to one day be a pediatric nurse, explained. "Parents who have children with the same condition have somebody to relate to, but I don't have anybody else to talk to about it. It was such a relief to meet families who are going through the same thing we are."

Currently, there is no treatment for NEHI. Taylor is hooked up to an oxygen tank to provide her body enough oxygen, as well as a feeding tube.

Children diagnosed with NEHI often breathe so fast that they burn calories and have trouble gaining weight. In Taylor's case, she was often losing weight, but could not eat properly because of the cleft in her larynx. She receives three feedings during the day — at 11 a.m., 2 p.m. and 5 p.m. — as well as receiving a continuous feeding at night while she sleeps.

Despite the tubes that she is attached to, Taylor loves going out, especially to the grocery store and Costco. While an outing for the Byrnes requires more work than most other families — Byrne must make sure she brings enough oxygen tanks for Taylor — she says that her daughter is not even aware of the disease that is supposed to slow her down.

"She has no idea that anything's wrong with her," says Byrne, as Taylor runs around their living room. "I mean, look at her."

In fact, if her health permits, Byrne has high hopes of attending the Carousel Fund's 24th annual Casino Night on Oct. 1, where they will meet the people who have helped support them for the first time.

"She has a dress ready and everything," Byrne says with a smile.

(Contact Becca Pilkington at argus@arguscourier.com)

Show Comment