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Hendricks County families invite community to support children with rare genetic condition

Hendricks County families invite community to support children with rare genetic condition

Hendricks County families invite community to support children with rare genetic condition

HENDRICKS COUNTY, Ind. (WISH) – A Hendricks County family is asking for support to help children fight back against a life-threatening genetic condition. It’s called Prader Willi Syndrome.

Emma Walker was diagnosed with Prader Willi Syndrome as an infant. Now, she is six years old and lives in Avon.

When she was diagnosed, her parents were told she wouldn’t be able to control her emotions, she would have constant false hunger cues, and, because of low muscle tone, she wouldn’t run. Well, Emma just completed a track program at the YMCA in Avon. Her parents tell News 8, she continues to prove doctors wrong.

Emma lives with a very strict nutrition plan to limit sugar addiction and control the insatiable appetite that comes with Prader Willi and her family actually mentors and supports other central Indiana families who have children with Prader Willi Syndrome.

On Saturday, September 14, the Walker family and others affected by the condition will walk to raise money for research.

Prader Willi Syndrome is rare. The Foundation for Prader Willi Research said it affects about one out of every 15,000 people and the biggest challenge for those with it is avoiding morbid obesity. The Walker family is hoping research into the condition may also bring valuable knowledge and ways to battle the obesity epidemic as a whole.

Emma’s mother Teresa Walker said the walk is to celebrate everything that Prader Willi Syndrome is and those who are fighting back against the condition.

“It’s never about doom and gloom for us. We know that it’s life-threatening, but we don’t get anywhere dwelling. We get exactly where we need to be by working,” Walker said.

The One Small Step for Prader Willi Syndrome walk is at Washington Township Park in Avon on Saturday, September 14 from 1:30 p.m. until 4 p.m. It is free and open to the public.


Florida woman accused of zipping her boyfriend in suitcase for hours until he died

(CNN) — Sarah Boone called 911 and said her boyfriend got trapped in a suitcase and died during a game of hide-and-seek, according to court records.

The Florida couple had been drinking Chardonnay and doing puzzles Sunday night in their Winter Park apartment, Boone told authorities, when they thought “it would be funny” to hop in a suitcase as a part of the game, according to an arrest affidavit from the Orange County Sheriff’s Office.

Boone, 42, zipped up Jorge Torres Jr. in the blue suitcase containing a few items for donating. Two of his fingers stuck out, so she assumed he could open it, according to the affidavit.

She went upstairs to bed and thought he’d get himself out of the suitcase and join her, only to wake up Monday and find him still in it and not breathing, the affidavit says.

Boone was arrested Tuesday and faces a second-degree murder charge after investigators determined videos on her phone contradicted her story.

The phone footage shows her mocking her boyfriend as she filmed his cries for help, and telling him it was his punishment for cheating, according to the arrest affidavit.

“I can’t f**king breathe, seriously,” her boyfriend said in the phone video. “That’s on you. Oh, that’s what I feel like when you cheat on me,” she responds.

The video shows the victim pushing on the suitcase and trying to get out, the affidavit says. When police showed the video to Boone, she pushed it away halfway through and said she didn’t want to watch it, the affidavit says.

Police searched her iPhone after she signed a waiver and gave verbal and written consent. CNN has reached out to her public defender.

Boone denied intentionally leaving Torres in the suitcase, according to the affidavit.

Boone called police Monday afternoon and said she woke up hours earlier but assumed her boyfriend was on his computer in another room. When she could not find him, she suddenly realized he was still in the suitcase.

“Sarah unzipped the suitcase and found Jorge unresponsive and not breathing,” the affidavit says. “Sarah zipped Jorge in the suitcase to where he could not get out. Jorge begged Sarah repeatedly telling her he could not breathe and Sarah left him in the suitcase … and demonstrated a depraved mind without regard for Jorge’s life.”

When police arrived at the scene, they found the victim near the front door with a laceration on his lip and bruising around his eye.

Boone is being held without bail. No cause of death is listed on the arrest affidavit.