CROWN POINT | At 13 months, the parents of Emberly Brazil knew something wasn’t right.
Her mother, Rachel Brazil, said her daughter was having seizures at night, was only saying a few words and stopped connecting emotionally with the family.
“For a few months, it was as if she wasn’t even here,” she said.
This past May, Emberly, who is now 30 months old, was diagnosed with Rett syndrome.
According to the National Institute of Neurological Disorders and Stroke, the neurodevelopmenal disorder effects the use of hands, head growth and causes problems walking. There is no cure for the syndrome, which affects one in every 10,000 to 15,000 girls.
After learning about the girl’s diagnosis, the Untouchables Motorcycle Club decided to give the proceeds from its annual Rumble in the Jungle to the Brazil family. The event is taking place Saturday at the group’s clubhouse at 275 E. 71st Ave., in Merrillville.
Todd Cliborne, the club’s co-founder and president, said the event will include a poker motorcycle run starting at 1 p.m. at the Safe House Bar and Grill in Crown Point, where participants will go to five locations to pick up a card. The person with the best poker hand will win a prize.
The event will continue at its clubhouse, where food and entertainment will be provided. The cost for a single rider is $10, $15 for a double rider and $5 for entrance to the clubhouse.
The club, which is mostly made up of officers and retired law enforcement officials, has already secured $5,000 for the Brazil family from Telmate’s fallen heroes fund, said JoAnn De Jesus, the marketing communications manager for the company. Telmate is the company that facilitates video, phone and text for inmates housed at the Lake County Jail.
Michael Brazil, a patrolman for the Crown Point police department, said the club reached out to his family about having the fundraiser within weeks of the diagnosis.
“Out of nowhere they have really embraced Emberly,” he said. “They’ve just been very supportive along with the community.”
He said his family has tried to maintain a normal life for their two young girls while also trying to treat Emberly’s symptoms.
During an afternoon this week, Emberly wore arm braces to make her feel more comfortable as she played with a toy bus and ate Goldfish crackers. Meanwhile, her 5-year-old sister, Adelyn, played with her Barbies on the kitchen table.
They’ve modified a bicycle so she can go on family rides and play with the neighborhood children. Michael Brazil said Adelyn also had to adjust to the realization that she doesn’t have the type of playmate she thought she would have when she got a little sister.
“We are trying to learn what her mannerisms mean,” he said. “You can tell she’s trying to tell you something. It’s figuring out what it is.”
Instead of verbalizing what she wants, Michael Brazil said the girl uses her eyes. The couple joked they know when their daughter is angry at them in the mornings by the look in her eyes.
Rachel Brazil, a teacher in Merrillville, said something like a child’s drawing on a refrigerator are daily reminders of things Emberly might not accomplish.
Still, the family remains hopeful of what Emberly can accomplish as she continues to grow.
One of the items they want to buy for Emberly is a Tobii Eye Gaze, which is a device that uses eye-tracking technology to speak for someone. They also plan to purchase a walker, and intend to use the rest of the money raised Saturday to pay medical expenses.
The family also said they want Saturday’s fundraiser to spread awareness about Rett syndrome.
“I knew about Rett, but we didn’t know about the in and outs,” Michael Brazil said. “People don’t really know the details of Rett syndrome.”
For more information about Telmate’s Fallen Heroes Program visit telmate.com/fallen-heroes.