A mother’s advocacy results in answers

Aevary Kiernan, left, with her mother Jill Kiernan.
Photo by Jill Kiernan
Aevary Kiernan, left, with her mother Jill Kiernan.
Correction: An earlier version of this story misstated Aevary Kiernan's need for a knee replacement, and did not specify that a majority of cases of Tatton Brown Rahmann Syndrome are caused by random genetic mutations that were not inherited from parents.
STANFORDVILLE — Shortly after her daughter’s birth 21 years ago, Jill Kiernan realized baby Aevary was not progressing in the same manner as many newborns generally do after birth.
Kiernan, at the time a general education/special education teacher who lived — and continues to reside — in the Pine Plains area, was baffled by what she was seeing. Describing Aevary as “a floppy baby,” the infant was large, 9 lbs. to be exact, with low muscle tone, her tiny feet were turned down, there were difficulties with feeding, and the infant was slow to develop. While Jill Kiernan didn’t realize it at the time, she was at the beginning of a decade-long quest to get some answers on her daughter’s condition.
Clarity did not come easily or quickly. At the time of Aevary’s birth, Tatton Brown Rahman Syndrome, the condition affecting Aevary, was not yet identified by the medical community. In fact, the condition would not be pinpointed until 2014, designating it as a more recently discovered disorder.
One of the first steps in understanding Tatton Brown Rahman Syndrome is the knowledge of what constitutes a syndrome versus a disorder versus a disease. By definition, a syndrome is marked by groups of symptoms which simultaneously occur while a disorder is defined as a group of symptoms disrupting normal and daily functioning, resulting in significant impairment. Disease is an already identified medical condition with a distinct cause and with measurable components. In the case of Tatton Brown Rahman Syndrom, with the research and data in place, though limited, it is now all three — a syndrome, a disorder, and a very rare disease indeed which, according to Kiernan, affects about 450 identified persons worldwide.
At Aevary’s birth, there was little to no information available in the medical journals as to the source of her condition. Aevary’s growing list of symptoms mystified everyone around her — including health professionals, who were unable to provide the Kiernan family with any definitive insight. With the passage of time during Aevary’s childhood, additional issues would present themselves. Aevary, of course, was large from birth, but her physical growth accelerated at an abnormal rate. Unusually bushy eyebrows sprouted above her eyes. Developmental delays and intellectual challenges surfaced. Still, the Kiernan family received no answers to their inquiries from Aevary’s healthcare providers.
When Aevary was about ten, progress was made on determining her condition, which Kiernan describes as “a long hard journey,” which was finally labeled as Tatton Brown Rahman Syndrome. The disease is a complex autosomal dominant disorder affecting children who, by chance, inherit one copy of a mutated gene from either parent — but most cases occur because of a random mutation not present in the parent's DNA. More specifically, according to the website of the Tatton Brown Rahman Syndrome Community, a research and advocacy organization founded by Kiernan in the wake of Aevary’s official diagnosis, the disease is “a rare genetic disease caused by pathogenic variants (previously called mutations) in the DNMT3A gene… It is also called DNMT3A Overgrowth Syndrome.”
First identified in thirteen cases in the United Kingdom in 2014 by doctors Katrina Tatton-Brown and Nazneen Rahman, who were researching genetic drivers of overgrowth in individuals, members of the Tatton Brown Rahman Syndrome population are physically characterized by height and weight as affected individuals tend to be tall and heavy with a large head circumference known as macrocephaly and may display unique facial features. They may present with mild to severe intellectual disability. Behavioral and mental health issues may also surface as well as cardiac defects, orthopedic issues and autism, but according to Kiernan, a range of individual presentation of symptoms is common, the severity of which can vary between persons. Additionally, the Tatton Brown Rahman Syndrome gene is also linked to incidences of leukemia.
For Kiernan, while the diagnosis shed some light, it also brought some uncertainty. “It was a relief to have an answer,” she said of pinpointing the source of Aevary’s condition. But with the diagnosis came initial vagueness attached to Aevary’s outcomes or life expectancy as very little was known at the time of Tatton Brown Rahman Syndrome due to the small number of affected persons. Undeterred, however, Kiernan realized she could play a part in guiding medical research by sharing information with other families affected by Tatton Brown Rahman Syndrome as well as researchers, hence the creation of the Tatton Brown Rahman Syndrome Community.
The Tatton Brown Rahman Syndrome Community began with the creation of a website and a Facebook page by Kiernan. Through these mediums, Kiernan connected with other Tatton Brown Rahman Syndrome-affected families who began exchanging information on particulars pertaining to their individual cases. Eventually, the families began to meet. “We began informally gathering for support,” explained Kiernan, acknowledging the value of strength in numbers. Family conferences began to be organized with one taking place in 2018 at Rocking Horse Ranch Resort in Highland, New York. “Families came from all over the world,” explained Kiernan. “Dr. Tatton-Brown came over from the U.K.”
As the Tatton Brown Rahman Syndrome Community expanded, it led to the creation of a registry, which was launched in 2021 as families began donating blood and skin samples. The registry, in turn, became a valuable tool to researchers, who previously had little information available to them. As word of the existence of the Tatton Brown Rahman Syndrome Community spread, even more cases began to be identified, which, in turn, fueled the medical community with what Kiernan terms as “patient-driven research”.
Sources of funding for further research for the Tatton Brown Rahman Syndrome Community remains a challenge due to the rarity of the condition. “It’s hard to find opportunities in the rare disease space,” said Kiernan, who added that the Chan-Zuckerberg Institute provided $600,000 in grant monies a few years ago, but the funds have since dwindled. Appropriate grants, Kiernan explained, are difficult to find due to the rarity of the disease.
While Jill Kiernan is proof positive of how one person can make a difference, she’s focused less on accolades and more on her daughter. Aevary Kiernan has defied medical expectations with her viability, given the seriousness of her condition. While she will not be able to live independently, Aevary lives the life of a young woman who, while navigating physical and emotional challenges, enjoys spending time with animals, telling jokes, acting and singing. She was even featured on a segment of “Good Morning, America” which showcased her performance in a production of “Beauty and the Beast.” Aevary has completed high school via special education through the Pine Plains school district, first at the Center for Spectrum Services and then at the Center for Discovery. She is currently attending the Tri-Form program for individuals with challenges in Columbia County. Aevary’s future is uncertain, given her medical history and the possibility of future medical challenges. She suffers from joint and spinal issues, and will soon need a knee replacement. Whatever is to come next for Aevary is, for Jill Kiernan, “a ticking time bomb feeling,” but Kiernan remains optimistic about the future given how far she and her family have come on their Tatton Brown Rahman Syndrome journey. “We’ve learned a lot living in the rare disease world,” she said.
Additional information on Tatton Brown Rahman Syndrome can be found at: www.tbrsyndrome.org.
AMENIA — The first day of school on Thursday, Sept. 4, at Webutuck Elementary School went smoothly, with teachers enthusiastically greeting the eager young students disembarking from buses. Excitement was measurable, with only a few tears from parents, but school began anyway.
Ready for her first day of school on Thursday, Sept. 4, at Webutuck Elementary School, Liliana Cawley, 7, would soon join her second grade class, but first she posed for a photo to mark the occasion.Photo by Leila Hawken
Demitasse owner Hayden McIntosh Geer said she is excited by the shift to online sales.
MILLERTON — Some might have argued that launching an in-person retail business during the height of the COVID-19 pandemic wasn’t advisable. But against all odds, Demitasse in Millerton managed not only to build a thriving, mission-based brand in a small storefront on Main Street, it developed a loyal customer base and provided a welcoming space for visitors. Last week, Demitasse announced it is closing-up shop and moving fully online.
“We are excited,” said owner Hayden McIntosh Geer, who opened Demitasse with her husband, Richard, in 2020. “Though we will miss our customers and the camaraderie on Main Street, it feels right and there was no second guessing.”
The building that houses Demitasse and neighboring Candy-O’s is on the market, leaving the future uncertain. Geer said she and Richard will continue supporting their favorite Millerton spots, now with more time to enjoy local businesses and neighbors.
Known for its carefully selected gifts and home goods, Demitasse has received frequent praise for its curation. Yet Geer is quick to deflect. “I didn’t know I was creative until I opened the store,” she joked. “When anyone talks about the curation I just point to the makers. They are the ones who create the beautiful items that hold purpose and intention. That’s what made our place special.”
The decision to open a gift shop was never part of a master plan, Geer said. “We found our way as we went along and it happened very organically.” But from day one, she knew she wanted to support marginalized artists and makers.
Demitasse owner Hayden McIntosh Geer, right, and her husband, Richard, sitting on the bench in front of the Main Street storefront. Photo by Jessica Yurko
For example, Sidai Designs, which makes beaded jewelry in Africa, provides work for 120 Maasai women and helps support their communities. Maison d’Haiti, which produces handcrafted goods in Haiti, employs nearly 100 women at fair-trade wages, giving them a reliable income through sales in the U.S. and Haiti.
One of the highlights of having a storefront — and a true testament to what she and her husband had created — came when the editor of a major culture and lifestyle magazine told Geer how much she loved shopping at Demitasse for its quality and mission-driven products.
“I could have quit right there,” Geer joked, reflecting on the highs and lows of the last five years.
Just as thoughtfully as the products were curated, every element of the store reflected care and craftsmanship. Hayden and Richard incorporated their tastes and skills into every nook and cranny, including shelving made from reclaimed wood from their home. Some of those shelves now have a new life at The Beehive, a boutique in Mount Kisco, New York.
Today, their digital shelves continue to highlight a diverse range of makers, with biographical details available on each product listing. The website carries the same aesthetic found in-store, maintaining the mission to support LGBTQ+ makers, environmentally friendly products, and Black- and women-owned businesses.
Looking ahead, Geer says, “We want people to know that if they enjoyed shopping in our store, they’ll love our website.” Shoppers can still expect beautiful gift wrapping and flexible exchange policies, and Geer is offering personal deliveries within driving distance on a limited basis.
Above all, Geer says her heart is full of gratitude for her customers. “They came in, shared life stories and became friends. We love Millerton, and I hope people will remain in touch.”
Millerton Police Chief Joseph Olenik shows off the new gear. Brand new police cruisers arrived last week.
MILLERTON — The Millerton Police Department has received two new patrol cars to replace vehicles destroyed in the February 2025 fire at the Village Water and Highway Department.
The new Ford Interceptors are custom-built for law enforcement. “They’re more rugged than a Ford Explorer,” said Millerton Police Chief Joseph Olenik, noting the all-wheel drive, heavy-duty suspension and larger tires and engine. “They call it the ‘Police Package.’”
Olenik worked with The Cruiser’s Division in Mamaroneck, New York, to design the vehicles.
“We really want to thank the Pine Plains Police Department for their tremendous support,” Olenik said. After the fire, “they were the first ones to come forward and offer help.”
The new police cruisers are outfitted with lights with automatically adjusting brightness to best perform in ambient conditions.Photo by Aly Morrissey
Since February, Millerton officers have been borrowing a patrol car from Pine Plains. With the new vehicles now in service, Olenik said he plans to thank Pine Plains officers by treating them to dinner at Four Brothers in Amenia and having their car detailed
Erin Rollins of Millbrook in the Fashion Feed booth, open year round, at the Millbrook Antiques Mall. All proceeds from Fashion Feeds go to the Food of Life Pantry.
MILLBROOK – In a time when optimism and unity can feel elusive, sometimes a walk down Franklin Avenue is enough to feed the soul. With Millbrook Community Day just around the corner, one highlight will be Fashion Feeds, a community effort led by Millbrook native Erin Rollins, whose mission is to fight local hunger.
The concept is simple. People donate new or gently used designer fashion, which is sold at affordable prices, and all proceeds benefit The Food of Life/Comida de Vida Pantry at St. Thomas Episcopal Church in Amenia.
Since hosting her first charitable clothing swap 12 years ago, Rollins has raised nearly $100,000 for the pantry. She expects to hit six figures this month.
“Food insecurity is a real issue, and when I’m able to walk into the church and hand over money to a need that is so significant, it fills my cup,” Rollins said.
Fashion Feeds plays a vital role in sustaining the pantry, which serves 653 individuals from 156 households each week. Rev. AJ Stack, priest-in-charge at St. Thomas Episcopal Church and executive director of the Food of Life Pantry, said Fashion Feeds has become one of the pantry’s most successful fundraisers. “With the rising costs of food, housing, healthcare, and transportation, food pantries have become essential for families’ survival,” Stack said.
Fashion Feeds clothing is available year-round at the Millbrook Antiques Mall, but the annual pop-up will take place during Community Day. This year’s sale runs Sept. 18-20, featuring racks of one-of-a-kind finds on the patio and inside Corcoran Country Living from 9 a.m. to 5 p.m. Friday and Saturday.
New this year is a $25 pre-sale Sip & Shop, which includes a glass of prosecco or sparkling water and early access before doors officially open Friday morning.
From J.Crew to Giorgio Armani, shoppers can find designer clothing and accessories at unbeatable prices — from $5 to the thousands — with every dollar going to local families.
An interior designer by trade, Rollins backs up her artistic eye with research to ensure garments and accessories are priced to sell, while also respecting the value of each donation.
“It’s time-consuming,” Rollins said. “But you want to make sure you’re valuing everything that’s donated to you.”
After becoming empty nesters in 2013 and selling their Millbrook landscaping and garden center business, Rollins and her husband were ready to start a new chapter. Rollins found inspiration after attending a clothing swap in Rhinebeck.
“On the way home, I thought, ‘I can do that,’ so I planned my own event that fall and had my friends donate their clothes,” she recalled, laughing about how she made soup for more than 30 women.
While soup is no longer served, the warmth of community continues to fuel the mission.
Millbrook Antiques Mall donates a year-round booth to Fashion Feeds, allowing all profits to go directly to the pantry. When donations outgrew Rollins’ basement, Global Self Storage offered a free unit to hold garment racks — donated by J.McLaughlin — and boxes of designer items. Corcoran Country Living also provides space during Community Day for the annual sale.
“It’s a true community effort in support of our neighbors,” Rollins said.
Beyond feeding families in eastern Dutchess County, Fashion Feeds also aims to address climate change and reduce pollution by promoting secondhand shopping. “Fast fashion is the second biggest polluter in the world, and by donating or purchasing vintage clothing, we’re preventing items from entering the waste stream,” Rollins said.
Though she has stitched Fashion Feeds from the ground up, Rollins prefers to stay out of the spotlight. Lakeville resident Susan Simmons discovered Fashion Feeds last year and was inspired by the mission. She now helps amplify Rollins’ work.
“She is an unsung hero because she does it all herself,” Simmons said, who is helping organize the Thursday Sip & Shop event. “It’s incredible what she quietly does for members of our community.”
Shoppers can support the cause by purchasing items from Fashion Feeds. Accepted payment methods are cash, check or credit card through Zeffy, a platform designed for charitable organizations.