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.