A neighborhood blooms with support for Rosie
Plus: Panthers trade for top draft pick — Property revaluations coming next week — Could city tax hikes be on the way? — Paper mill closure to eliminate over 900 jobs
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After a 2-year-old’s diagnosis, the Elizabeth neighborhood rallies to help fund a treatment with roving ‘gardens,’ restaurant fundraisers and even a teen benefit concert
Rosie Roetting, who’ll be 2 in April, is a bright-eyed girl who bounces around her Elizabeth home with her 4-year-old brother Lincoln. She has a rare disorder known as GMPPA. It’s sent the family on what her mom Diana calls a “diagnostic journey” to a series of specialists and arcane corners of the Internet. (Photo courtesy of the Roetting family)
by Jim Morrill
If you drove around Charlotte’s Elizabeth neighborhood recently, you may have seen them: gardens of solar-powered pink roses that moved from yard to yard, giving off a soft glow after dark. In the middle of each was a picture of a smiling, pigtailed girl named Rosie.
Or maybe you saw the roses and picture on “Rosie Nights” at Caswell Station or Hawthorne Pizza.
They were all signs of remarkable neighborhood support for Rosie Roetting, a 2-year-old who has a rare genetic disorder and an uncertain prognosis.
Her parents, Diana and Greg, have a lofty goal. They’re trying to raise the $350,000 it will cost to design a gene therapy treatment, the first step in a process they hope leads to an ultimate cure. Finding that cure could run to $4 million. So far, they’ve raised over $270,000 through a nonprofit called Bloom for a Cure.
Rosie, who’ll be 2 in April, is a bright-eyed girl who bounces around her Kenmore Avenue home. She has a rare disorder known as GMPPA. It’s sent the family on what Diana calls a “diagnostic journey” to a series of specialists and arcane corners of the Internet.
The mutation caused something called achalasia, a disorder that affects the esophagus. That made it hard to process food and why Rosie used to need a feeding tube. She still eats only food that’s pureed and faces the prospect of a permanent soft food diet. After two surgeries, she still meets weekly with a handful of therapists.
“The doctors always tell us every kid is different,” Diana says. “We don’t know what will happen. … No one can tell us life expectancy. No one can tell us how independent she’ll be as an adult. That’s the hardest thing for me to wrap my head around.”
Rosie’s is only the 22nd reported case of GMPPA. But in general, rare genetic disorders aren’t that rare. Advances in gene sequencing have helped scientists identify over 7,000.
Dr. Laurie Demmer, Medical Director of the Division of Genetics at Atrium Health Levine Children’s Hospital, said over 30 million Americans have a rare disease. “Every day, the list gets longer,” she added. “That’s all I see are rare diseases.”
Demmer said the $4 million the Roettings hope to raise — the cost from designing a therapy to manufacturing a drug — is about average for such disorders.
Diana Roetting, who worked as a chemical engineer and as a PA, or physician’s assistant, believes finding a cure for Rosie will make it easier for scientists to find cures for others. She’s overwhelmed by the neighborhood support.
“In reality nobody owes us anything,” she says. “We’re not entitled to help. … I probably have one cry a week thinking about how supportive and amazing our community is.”
The rose “gardens” elicited contributions from families that hosted them. On “Rosie Nights,” neighborhood restaurants contribute a portion of their evening proceeds. A teenage musician from Elizabeth is planning a benefit concert with his band. And a portion of the proceeds from next month’s Elizabeth 8K road race also will go to the cause.
Families in the Elizabeth neighborhood host rose “gardens” of solar powered pink roses with a photo of 2-year-old Rosie Roettling, as they raise money to help fund a treatment for a rare genetic disease Rosie is battling. (Photo by Jim Morrill)
“Your kids mean everything to you, and especially with my kids being same ages, you see them going through this and you think it could be your kids,” says Caitlin Boone, who lives with her husband and three children a block away from the Roettings on Kenmore Avenue.
Caitlin began figuring out how to help. She enlisted her mom, Kathy Foulser, who also lives in Elizabeth. Kathy came up with the idea of planting solar-powered pink roses around the neighborhood to raise money and awareness.
Caitlin and Kathy had a table for Rosie at a neighborhood-wide Christmas festival. Three kids came up and asked what it was all about. Later they came back and donated more than $60 of their babysitting money. “I don’t think you can help but be moved,” Kathy said. Other neighbors are pitching in as well.
Brenda Slater has enlisted Elizabeth restaurants in the cause. Her son Jack, a 17-year-old Myers Park junior, plans to book his band for a “Rock for Rosie” concert. Reena Powers is helping develop fundraising promotions including “Bloom for a Cure” golf balls.
Like the Boones and Foulsers, the Slaters are relatively new to Elizabeth. But their choice of neighborhood was intentional.
“We targeted Elizabeth as a neighborhood we were interested in,” says Brenda Slater, who moved from the Washington, D.C., area. “We heard about the community here. People take care of each other. They care about each other.”
A version of this story appeared in the Elizabeth neighborhood newsletter. For more information about Rosie, see www.bloomforacure.org or watch a short video:
Jim Morrill covered politics and government for the Charlotte Observer for 38 years before retiring in 2020. He can be reached at jmorrill634@gmail.com.
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This week in Charlotte: City officials hint at tax increase; Mecklenburg’s DWI convictions plummet 80%; Scholarship program notifies 2022 winners 8 months late; CLT to get facial recognition technology
On Saturdays, The Ledger sifts through the local news of the week and links to the top articles — even if they appeared somewhere else. We’ll help you get caught up. That’s what Saturdays are for.
Education
Central Piedmont rolls out new honors program: (Ledger 🔒) Central Piedmont Community College is starting an honors program this fall designed to give students extra opportunities for deeper learning. The announcement included a reminder to the media to no longer refer to the college as “CPCC” but instead use “Central Piedmont” on the second reference.
CMS hard-to-plan costs: (WFAE) Charlotte-Mecklenburg Schools’ plan that had encompassed 40 projects in January was pared back to 30 by February but will still cost more due to inflation. If voters approve proposed school bonds in November, the proposed projects would start between 2024 and 2028.
Politics
Possibilities at Eastland: (WSOC) A Charlotte City Council committee considered three possibilities for the old Eastland Mall site: a tennis facility, an aquatics center and a Target. Council members agreed to wait 60 days for the proposals to improve or to accept new proposals.
City tax increase coming? (WFAE) City officials hinted that they might recommend a tax increase this year, telling council members at a budget workshop that paying for city services and giving raises to employees will probably require higher tax revenues.
Local news
Helicopter crash lawsuit: (Observer) The wife of the WBTV meteorologist killed in a helicopter crash in November filed a lawsuit against the helicopter’s owner and operator and a maintenance facility. The suit by Jillian Myers, wife of Jason Myers, raised issues of improper engine maintenance and contaminated fuel.
Just in time for St. Patrick’s Day: (Ledger 🔒) The county will mail new tax values to property owners on March 17 and post the values on its website.
Business
‘Papertown’ loses its mill: (Ledger 🔒) The paper mill in the Western North Carolina town of Canton is closing after over 100 years of operation and laying off 900+ workers, in North Carolina’s second-largest layoff in the last decade. The town’s identity is intertwined with the mill, which is west of Asheville.
Big tower project on Morehead Street: (Ledger) Mecklenburg County has issued building permits for the Queensbridge Collective development at Morehead and South Tryon streets, which means developer Riverside Investment & Development intends to start construction on the two-tower residential/office project in the next few months.
Sports
Panthers trade for No. 1 pick: (ESPN) The Carolina Panthers acquired the overall No. 1 pick in this year’s NFL draft by trading wide receiver D.J. Moore and draft picks to the Chicago Bears. The move should allow the Panthers to draft a franchise quarterback. After the trade was reported, Moore reacted on Twitter: “😱😱”
Richardson memorial service: (WBTV) A celebration of life service for former Carolina Panthers owner Jerry Richardson is scheduled for March 18 at Wofford College. Richardson died last week at age 86.
From the Ledger family of newsletters
Mecklenburg’s plummeting DWI convictions: While the number of people killed in alcohol-related vehicle crashes in Mecklenburg County has risen over the last decade, the number of people convicted of DWI has plummeted by 80%.
WFAE CEO departs: WFAE CEO Joe O’Connor resigned suddenly this week after eight years of leading Charlotte’s NPR affiliate, saying in a note to staff that he was not pushed out and that he was leaving for personal reasons. The station’s board will search for a permanent replacement.
Mayor updates CLT greeting: Mayor Vi Lyles has recorded a new greeting to play at Charlotte’s airport after The Ledger reported in January that the old one contained outdated information on Charlotte’s pro soccer team and on the city’s size and growth.
Ticket limits imposed for NCHSAA basketball championship: The North Carolina High School Athletic Association has capped ticket sales of 6 tickets per purchase for today’s state championship basketball games after tickets were resold for hundreds of dollars last week. Myers Park High will face Richmond Senior High at 7:30 p.m. at the Dean Smith Center on the campus of UNC Chapel Hill.
Friday 🔒
Long-awaited payouts for local scholarship: Charlotte lawyer Michael DeMayo’s scholarship program opened applications for 2023 high school seniors before announcing recipients from 2022. Those recipients, who are now freshmen in college, were announced last week, just days after The Ledger started inquiring about it.
CLT to get facial recognition tech: Charlotte Douglas International Airport will be getting facial recognition technology for incoming international passengers starting in the fall.
40 Over 40 nominees revealed: The Ledger’s 40 Over 40 Awards, presented by U.S. Bank, are coming up — and we shared details on the 122 people who were nominated.
Park and recycling center envisioned for Monroe Road: A new county park and full-service recycling center has been proposed for the Monroe Road corridor in east Charlotte that would be funded by a $2.5M Covid relief grant.
You Ask, We Answer: A reader asked why the local school district is selling property in south Charlotte when it’s on a quest for a bond referendum to pay for new schools.
The British are coming to Charlotte FC: The mayor and a council member of a county in northwest England are coming to Saturday’s Charlotte FC match, where they’ll meet Mayor Vi Lyles and local business executives.
Jerry Richardson, one of the founding owners of the Carolina Panthers, was “a man who created a large part of Charlotte’s current cultural identity while being a man who was trapped by the culture of its past,” writes Jeremy Markovich in his newsletter North Carolina Rabbit Hole. Richardson died on March 1 at age 86.
Charlotte FC coach Christian Lattanzio is not afraid to move chess pieces around. Last Saturday in St. Louis, Lattanzio lined up midfield mainstay Brandt Bronico at left back — a move that not all Charlotte FC fans supported.
In case you missed it: The Ledger’s origin story
You see the emails that show up in your inbox. But how did The Charlotte Ledger turn into a sustainable business?
As we’re celebrating our 4th birthday in the month of March, editor Tony Mecia explained on Thursday how The Ledger evolved from an idea into a business — with employees and strategies and meetings and everything.
🎧 New podcast: The Ledger’s Tony Mecia and Cristina Bolling discuss The Ledger’s origin story.
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The article about improvements by TSA at CLT could have mentioned the absence of Clear. CLT is the largest in the US to not have it. The airport says it can’t add it until the terminal renovations are complete, but it has not been mentioned as the TSA screening stations are relocated. American Airlines is not a fan of Clear which is aligned with Delta and United. There might be pressure on CLT from AA to resist it. A loss for many flyers here who use it everywhere else!