Thursday, October 6, 2011

Join fight for Chloe



5K/Coffee Stroll around Lake Nokomis on Oct. 8 honors two-year-old who died

by Tesha M. Christensen, Longfellow/Nokomis Messenger

Last year, two-year-old Chloe Sophia Barnes was fighting for her life, a fight that ended on Nov. 19, 2010. This year, her parents, Erica and Philip Barnes, are planning a benefit in her honor.
A 5K Family Timed Run/Coffee Stroll to raise money for MLD (metachromatic leukodystrophy) will be held on Lake Nokomis Saturday, Oct. 8. Registration begins at 8 a.m. and the run/stroll starts at 9 a.m.
The event is in honor of Chloe’s brave and courageous battle, explains, Erica, a speech pathologist at Hale Elementary. Learn more at ChloesFight.org.
Every day this fall is an anniversary of something horrible that happened the year before, observed Philip, an analyst for Ameriprise Financial Center. Planning this benefit has helped he and his wife channel their ever-present sadness while being surrounded by people who care.
“We don’t feel alone in remembering Chloe because every waking moment people are asking about Chloe’s Fight and showing interest in Chloe. The planning is both stressful and therapeutic somehow,” Philip stated.
What’s wrong with my daughter?
At first, Philip and Erica thought their second daughter was just a slow learner. But when she wasn’t walking by 14 months, Erica knew something was wrong. Trained in rehabilitation, Erica could see that Chloe wanted to do something but couldn’t get her body to follow her instructions. Her little girl wasn’t sleeping and wanted to be held all the time. “That baby is in pain,” Erica told her husband.
The first pediatrician recommended physical therapy. They got a second opinion and this time the doctor ordered the MRI Erica had asked for.
When the hospital called back the same day, Erica knew the news was bad.
“There’s something wrong with her myelin,” Erica was told.
And that’s when she knew.
“At that moment I remember saying in my mind, ‘I’m going to lose Chloe. She’s going to die,’” Erica recalled.
Two agonizing months later, they got a diagnosis: metachromatic leukodystrophy or MLD. Children with this rare genetic disease are given three to five years. The doctor explained it like this: Chloe feels like her legs and hands are asleep all the time.
Despite the pain, Chloe was happy and courageous
That’s when Philip and Erica realized just how courageous their little girl was. Despite experiencing constant tingling and pain, she was still a happy little girl, said her mother, and the “spunkiest girl ever.” She would sit on a stool and try to pull herself up as taught in physical therapy, despite the colossal effort it was, Erica remembered. If she did it, she was so proud. “I did it, I did it,” she’d say.
“It was heartbreaking, but it was beautiful,” Erica observed.
MLD typically isn’t caught until a child loses the ability to walk and is finding it difficult to breathe. By that time, there is little doctors can do. The Barnes were lucky to catch it early and that gave them hope.
The Barnes scheduled a stem cell transplant at the Mayo Clinic on Oct. 1, 2010. Chloe died from complications of that transplant and an acceleration of MLD six weeks later.
“We were lucky and Chloe got a chance,” Erica said. “Most of the time, they don’t catch it early enough and kids slowly die. They go into a vegetative state.”
When it became clear to them that Chloe was going to die, they entered the hospice program and brought Chloe home.  Eva, who is 18 months older than Chloe, put a cookie on Chloe’s pillow and asked when her sister was going to be better. Telling Eva that her sister was home to die was a horrible conversation, recalled Erica. “I prayed for her. Why didn’t Jesus make her better?” Eva asked.
As Christians, Erica and Philip asked the same question and reached the conclusion that they can’t make sense of what happened. It is their paradox of faith, Erica explained.
Through everything that happened, Erica didn’t shy away from crying in front of Eva. After Chloe’s death, Erica told Eva, “I’m really sad Chloe is in heaven, but I’m glad that you’re here with me.”
It’s important to Erica and Philip that Eva knows that people can be happy and sad at the same time.
Help make a difference
The upcoming benefit on Oct. 8 was born out of a desire to do something and make a difference.
A friend’s wish to run a marathon in Chloe’s honor morphed into a 5K for serious runners and a coffee stroll for serious coffee drinkers. Three coffee stations with complimentary coffee and treats will be set up around Lake Nokomis, a place that Chloe used to visit every day with her daycare provider.
All of the money raised will go towards two groups Philip and Erica believe are engaged in research that will lead to answers about MLD.  “It’s not that this is an impossible thing to figure out,” Erica said. “They just need funds and the interest.”
Many local businesses have stepped up to help sponsor the event, including Carbone’s, Cork Dork, and Nokomis Beach Coffee. Information about sponsorship and volunteer opportunities are available at chloesfight.org.
“Chloe has many fighters on her team,” stated Erica. “We feel like this world has been (and continues to be) filled with hundreds of people holding up their own small lights so that we can see our way over this dark, dark road of suffering. Without them I’m sure we would have fallen by now.” 


WHAT IS MLD?
MLD (metachromatic leukodystrophy) is an inherited metabolic disorder that appears in early childhood and results in the progressive demyelination (deterioration) of a child’s brain. This results in a slow progression of various debilitating symptoms from gross motor damage (ability to walk and move), respiratory failure, and seizures to blindness and loss of mental capacity and finally to death.

WHO WILL BENEFIT FROM THE 5K RUN?
All proceeds from the Chloe’s Fight 5k Family Run/Walk will go directly to the MLD foundation (a non-profit 501(c) (3) tax-exempt organization) and will be dedicated to two research projects: The project conducted by Dr Paul Orchard from the Inherited Metabolic and Storage Disease Bone Marrow Transplantation Program at the University of Minnesota and the project conducted by Brains4Brain at the European Task Force on Brain and Neurodegenerative Lysomal Storage Diseases.

WHAT FRIENDS CAN DO TO HELP
• Don’t avoid people who are struggling with a terminal illness or have lost a loved one. “That’s the worst thing you can do,” Erica said.

• Do spend time with them, even if it is uncomfortable for you. What meant the most to Erica was when friends started crying when they saw them. It helped “knowing they were entering into our grief,” she said. When a friend accompanied her during an excruciating blood draw, she told Erica, “This is the most horrible thing I’ve ever seen.” That honesty affirmed Erica’s own feelings.

• Don’t telling grieving parents that “everything happens for a reason.” “You tell me the reason a 2-year-old gets diagnosed with a terminal illness,” said Erica. If you don’t know what to say, it’s fine to say that. “I don’t know what to say either,” Erica responded. On the flip side, saying something is better than not saying anything.

• Do find a way to help.  Don’t just ask, “What can I do?” because someone in crisis won’t have an answer to that. Someone set up a Caring Bridge site for Chloe. Another created a meal schedule. One of Philip’s coworkers donated PTO (paid time off).

ERICA’S ADVICE TO OTHER PARENTS IN THEIR SHOES
• Decide ahead of time how you are going to handle the many decisions you’ll be faced with. Philip and Erica decided that they would go with whoever felt most strongly about something, and then they’d never point fingers afterwards.

• You are always going to be sad -- but that doesn’t mean you won’t also be happy. Learn how to accommodate both.

• Your child knows you love her despite the myriad of painful procedures you are “letting” her go through. “It is built into children to love you and trust you,” Erica said.

Wednesday, October 5, 2011

Cedar Towing moving to site on Snelling

Community questions whether zoning geared towards pedestrians is right for area

by Tesha M. Christensen, Longfellow/Nokomis Messenger

Cedar Towing & Auction will be moving to the Longfellow neighborhood once the company complies with various landscaping and site conditions. Company representatives hope to move into the Snelling Avenue location sometime in October, according to Minneapolis Senior City Planner Becca Farrar.
The proposal by this one business has widened into a larger discussion of whether the pedestrian-oriented overlay district in the area should be removed.
Cedar Towing is presently located at 359 Hoover Street in Minneapolis on property owned by Fulford Hoover Investments, LLC. It will be moving to 3516 and 3534 Snelling Ave., the property that formerly housed John’s Welding Service. This land is owned by Martin Kemp.
To facilitate the move to Snelling Ave., Cedar Towing asked the city to remove the pedestrian-oriented overlay on the property, which prohibited a towing company. It also asked for a conditional use permit and a variance of the off-street parking requirement. Instead of 16 off-street parking spaces, Cedar will provide four. The additional parking spaces were deemed unnecessary by the planning commission because of the short-term nature of Cedar Towing’s customers.
The city’s planning division recommended that the city deny Cedar Towing’s request as it does not match the city’s comprehensive plan. However, Planning Commission members approved it at the Aug. 29, 2011 meeting and it was subsequently approved by the City Council at its Sept. 2 meeting.
Council member and planning commissioner Gary Schiff explained, “The Planning Commission approved the site plan unanimously because in this economy, we need jobs more than we need vacant industrial buildings.”
He added, “The property is zoned industrial and the business meets the industrial zoning requirements. The Pedestrian Overlay district on this block was a mistake, and never should have been placed. Ten years ago, when light rail opened, city planners had dreams of residential high-rise living popping up all along Hiawatha Avenue and pushing out all the industrial uses. Ten years after light rail opened, we can see that not only have developers not built hi-rises, but the pedestrian overlay district has harmed small businesses.”
Dan Swenson owns Alexander’s Import Auto, which is located one block away from the Cedar Towing site and is the type of business prohibited in the pedestrian overlay district. But because of his work with Minnehaha-Hiawatha Community Works, Swenson finds himself on both sides of this issue. It’s further complicated by his desire to have a good relationship with his new neighbor. “It’s bigger than me just sitting in my chair every day,” he acknowledged.
He understands the intended goals behind the pedestrian overlay (PO) districts, which encompasses a half-mile circle around each light rail station. A pedestrian overlay supports businesses that are friendly to people biking or walking, Swenson noted, but do not include businesses geared towards motorists.
 “The intentions of a PO are well intended, but don’t fit in this area,” he said, largely because of the existing grain elevators and industrial traffic on a narrow Dight Ave. coupled with the lack of sidewalks and streetlights. “The grain elevators are going nowhere,” he said, “so we have to work around them.”
He supports a move to change the pedestrian overlay, in part because he would like to expand his own business. However, he also questions why the city didn't bend its rules in the past for other businesses that have been in the area for a long time, such as his own. When he met with city staff about expanding his business because the property next to his came up for sale, he was told that his request wouldn't be approved because of the pedestrian overlay and the broader goals for the area. 
The Minneapolis Planning Department intends to review the zoning in the Hiawatha Corridor in the next 18 months, noted Schiff. Community meetings will be part of the planning process, but no specific dates have been set yet.
Neighborhood concerns
A neighborhood meeting about Cedar Towing’s proposal was held on Aug. 25 at St. James A.M.E. Church. Citizens asked questions and gave some input on conditions they wanted to see attached to the conditional use permit and variance. “Neighbors had great suggestions for improving the property that became requirements for the business,” said Schiff.
Community members expressed concerns about whether the impound lot would generate crime, lower property values and increase noise and traffic.
Swenson pointed out there was a two-day notice for the meeting and only about seven community members attended. “I don’t think the community had a good chance for input,” he remarked.
According to Judy Nelson, who lives about four blocks from the Snelling site, the neighborhood meeting was useful “because it gave a chance for the Cedar Towing owner to demonstrate his family connection to the property and for the neighbors to get to know the owner and more about the business impact on the neighborhood.” She added that Cedar Towing “will be more likely to survive in these down times by moving to this property, which is already owned by a family member.”
Also, because of the meeting, landmark sculptures (such as the broken heart) will be preserved, Nelson observed. The sculptures on the site will be refurbished, if possible, as part of an overall project to improve the landscaping at the Snelling Avenue sight. A new fence will be installed and trees planted at various locations, including along Dight Ave. The giant crane on site will be dismantled.
“The decision by Cedar Towing to only use Dight Avenue for bringing cars onto the site seemed to allay most concerns by neighbors who attended the meeting,” observed Schiff, who organized the neighborhood meeting.
Cedar Towing will also work to change the official address of the property from Snelling to Dight, and remodel the building to include a front entry and parking area on Dight, according to Farrar.
Cedar Towing’s business operations include service tows, motor club towing/services, impound towing, jump starts, lock-outs, winching, tire changes and gas fills. Cedar Towing also provides snow plowing services, lot sweeping and a striping service. The business holds an Auto Lien Auction most Tuesdays at 11 a.m.
Cedar Towing declined to be interviewed for this story.


What is a Pedestrian-Oriented Overlay District?
The PO district is intended to preserve and encourage the pedestrian character of commercial areas and to promote street life and activity by regulating building orientation and by prohibiting certain high impact and automobile-oriented uses. To enhance the pedestrian experience, the ordinance requires building to provide amenities such as tables, seating and landscaping in the area between the building and the lot line.

The following uses are prohibited in the PO Overlay District:
• Drive-through facilities
•  Automobile services uses
• Transportation uses
• Self service storage
• Commercial parking lots, including the expansion of any existing commercial parking lot
• Conversion of any accessory parking lot to a commercial parking lot

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