Fundraiser aims to help Cambria County girl with rare genetic condition | News, Sports, Jobs

A fundraiser has been organized to aid Trinity McCall, 5, (right), seen with her father, Dylan, brother, Thomas, and mother, Kayla. Trinity has a rare condition known as the ATP6V0c genetic mutation.
Courtesy photo

EBENSBURG — A Cambria County couple is asking the community for help in kickstarting research for their daughter, who is facing an extremely rare genetic condition.

Trinity McCall, 5, is one of only 27 individuals across the globe who have the ATP6V0c genetic mutation. According to research posted to the National Library of Medicine, the ATP6V0c mutation can present itself as developmental delays, early onset epilepsy, intellectual disabilities and/or cardiac abnormalities, among other possible symptoms.

Since the condition has such a small sample size and research is still in its nascent stages, contributing a biosample could lead to a significant development in treatment for McCall and others with the ultra-rare condition.

To that end, her parents, Kayla and Dylan, are hosting a “Community Day” fundraiser at Hoss’s Steak & Sea in Ebensburg on Saturday in hopes of reaching the $1,000 required to collect a biosample from their daughter.

The McCalls’ efforts are a part of the larger #20for20 Campaign organized by the v-ATPase Alliance, a 501(c)(3) nonprofit dedicated to supporting families impacted by rare v-ATPase genetic conditions, that is hoping to raise $20,000 to collect 20 different samples that could catalyze a critical breakthrough in medical research of these conditions.

“It would be used to help treat her and anyone else who has (the condition),” Dylan McCall said.

Trinity was diagnosed in 2022 following a series of genetic tests at UPMC Children’s Hospital of Pittsburgh, after experiencing a complex history of seizures, global developmental delays and diagnosis of Hydrops Fetalis from her complicated birth, according to Kayla McCall.

Due to her condition, Trinity struggles with every task throughout the day, fatigues easily and sleeps many hours a day and night and uses a feeding tube in her stomach for most of her daily nutrients and fluids, McCall said.

Trinity has remained a “bright light” to those around her throughout her health journey, McCall said, and uses her skills to the best of her ability.

“She amazes us with her kindness and love of life and others. Nobody can pass her without a warm and loud ‘Hi! Your name?’ or a ‘You’re nice!’” McCall said.

Managing Trinity’s intractable mixed-type epilepsy, sensory processing disorder and developmental delay is an ongoing process for the McCall family, Kayla McCall said, which includes administering several medications and regular doctor appointments.

Trinity will begin kindergarten this year in the Central Cambria School District, where she will receive specialized instruction, therapy and an opportunity to make friends with her classmates, McCall said.

“Her condition has helped shape every aspect of our lives, and taught us never to take even a single second of happiness or health for granted. We’ve more fully embraced and strive to live out our Catholic faith as it’s the source of our strength,” McCall said.

Trinity’s older brother, Thomas, has grown into a “wonderful young man and helps greatly to brighten her difficult days and helps other kids know how to play and interact with Trinity,” McCall said.

“(Thomas) is the most strong person I know, and we couldn’t be more proud of him,” McCall said. “Although each day is different and more often than not difficult, Dylan and I wouldn’t trade Trinity for anything, but we would love to ease some of her struggles.”

Hoss’s has committed 20% of their profits from the event to support the McCalls, according to a news release, as part of the restaurant’s “generous and long-standing commitment to local causes.”

The McCalls hope that the Community Day becomes a rallying point for the

v-ATPase community and their loved ones.

“This Community Day is about more than just fundraising; it’s about bringing our community together to support a cause that impacts families directly here in Ebensburg,” Dylan McCall said in a statement.

According to v-ATPase Alliance co-founder Ana Moreira, “this will be our first restaurant fundraiser, and we are honored to be supporting the McCall family. We are so incredibly inspired by their story, their strength and their will to turn their personal journey into a beacon of hope for the entire community.”

Mirror Staff Writer Conner Goetz is at 814-946-7535.

If you go

What: Community Day fundraiser in support of Trinity McCall, who has the rare ATP6V0c genetic mutation

Where: 4343 Admiral Peary Highway, Ebensburg

When: From 11 a.m. to 8:30 p.m. on Aug. 9. Free tickets to attend can be acquired from Dylan McCall at dylan.121.@gmail.com