Post-Tribune |

Davich: Updates on 4 special children and a popular topic

Throughout the year, readers have asked me to write more updates to my columns. Most of those requests involve children with unique challenges.

Today’s year-end, look-back column includes brief updates on four children, as well as the mention of the one topic that received the most reader feedback, which was unexpected. And no, it doesn’t involve President Trump.

Ben

When I first met Ben, the 11-year-old whose parents were killed in a domestic violence incident in September, he had only one request regarding a photo.

“I want a picture of my mom and my dad,” Ben said, while looking through his iPad for just the right photos of his deceased parents.

Since that poignant request, Ben has become something of a media darling. His family is excited about his television debut in season six of “MasterChef Junior” on Fox, expected to air in February.

“Ben still loves to cook and bake,” said his uncle, Anthony Edwards, of Gary’s Miller section.

Ben also continues to do very well in school, earning all A’s and one C while participating in extracurricular activities. Ben had a great Christmas, the first without his parents, and he’s eager to return to school.

The #Love4Ben fundraising campaign for his future has raised more than $21,000 with donations still coming in, I’m told.

“We are trying to raise $1,565 more between now and Dec. 31 to unlock a $2,500 challenge grant from Mortar Net Solutions, Gary Johnson and Brenda Ashley,” said Trent McCain, the attorney who helped organize the campaign.

Harley Hart

On June 23, Harley Hart turned 1, a milestone that her parents only hoped and prayed for when she was born.

Harley came into this world prematurely with trisomy 18, a chromosome disorder leaving her with three 18th chromosomes in a cell instead of the normal two. The extra chromosome results in congenital malformations and an unknown life span.

If their frail baby could somehow make it to her first birthday, she could have a shot in life, they believed. And she did.

“Since Harley’s first birthday, she has been doing very well,” said her mother, Jill Hart.

Harley had her heart repaired in October, and has since been gaining weight and becoming more interactive, with more of her personality shining through.

“We were overjoyed to have celebrated a second Christmas with her,” Hart said.

Sophia Burns

Sophia Burns hasn’t spoken a word in more than a decade, but her 100-watt smile says volumes.

In March, I attended her 15th birthday and quinceanera at the Hall of Justice in Crown Point, where she beamed all night from her wheelchair.

As a toddler, Sophia was diagnosed with Rett syndrome, a rare neurologic disorder afflicting females almost exclusively. They’re born seemingly healthy, but begin to lose their motor skills and body functions as toddlers. Sophia can no longer walk, talk, eat by mouth or use her hands.

“She is trapped in a body that refuses to work,” explained her mother, Mimi Burke.

These days, Sophia is “stable,” Burke said, a good thing considering all her doctor appointments, hospital visits and health scares.

“She remains strong and happy. She finds something every day to smile about. She loves spending time with her brother and his friends. Watching them play basketball is one of her (new) favorite things,” Burke said.

“She went water skiing in July and loved it. We also have a Disney trip planned for late February. She will also be going to see Taylor Swift in June in Chicago,” she said. “Some days are harder on her, and me, than others, but there is beauty in every one of them. Sometimes I just have to look a little harder to see it.”

Braxson Jones

When I met Braxson Jones in April, the 15-month-old from Hebron wailed loudly even as his mother tried to soothe him. He didn’t do this before July 24, 2016, said Susan Jones, who claimed in a probable cause affidavit that the boy’s father violently shook Braxson that day.

Braxson was diagnosed with diffuse cerebral edema, and subdural and subarachnoid hemorrhage, and bilateral retina hemorrhage. He was in critical condition and underwent emergency brain surgery.

On April 14, police charged Curtis Jones with battery resulting in serious bodily injury to a person less than 14 years of age, as well as aggravated battery and neglect of a dependent, all level 3 felonies. He was arrested and jailed before bonding out April 20, police said.

“I am still waiting for justice,” Susan Jones told me. “Braxson’s father is living in Florida, and he has been excused from some criminal court dates.”

“There isn’t much progress going on with Braxson, although he is getting stronger and has better neck control,” she said, noting another brain surgery is scheduled for 2018. “He was featured in the campaign for the national shaken baby organization, and I love the way Braxson loves me.”

Read my initial columns on these amazing kids on my webpage: www.chicagotribune.com/suburbs/chi-jerry-davich-staff.html

Most traveled column topic

Earlier this year, I wrote a brief update to a 2015 column with the headline, “What to do with threatening neighbors displaying mental illness?” For some reason, it has attracted more reader feedback than any other topic.

I heard from readers across the country and from around the world. Either there are a lot of disgruntled neighbors on this planet, or the online column’s search engine optimization words caught readers’ attention.

“Thank you for your article,” wrote Michelle Brenner, of Huntington Harbour, Calif., just last week. She told of a woman allegedly killed by a neighbor she feared. “She told a friend that if anything happened to her, he would be the cause.

“I hope that you and other members of the press will continue to explore the factors that have rendered us unable to protect ourselves from those who pose a danger.”

jdavich@post-trib.com

Twitter@jdavich