‘Purple for Penny’ fundraiser supports 5-year-old Penny Brady’s Rett Syndrome fight

Published 12:15 am Saturday, September 16, 2017

LAPLACE —Penelope “Penny” Brady may not be able to speak, but that doesn’t mean she can’t understand.

Cognitively, she is just like any average almost 5-year-old. She attends school at Wee Care Center in LaPlace, loves to snack, goes horseback riding and watches Moana time and time again. For the first year and a half of her life, she developed typically, until she began showing signs of Rett Syndrome.

A rare disorder caused by a gene mutation, Rett Syndrome took away Penny’s speech, muscle tone and hand coordination. Life post-diagnosis became challenging, and there is always a possibility of further regression. However, there is hope.

Texas Children’s Hospital in Houston houses one of the few Rett clinics in the country. Next spring or summer, Penny will participate in a clinical drug trial for Trofinetide, a synthetic protein that may help her regain hand function or speech.

Penny’s mother, St. John the Baptist Parish native Pamela Brady, reached out to every school in the parish and proposed a “Purple for Penny” day to be held on her birthday, Oct. 3. She asks for students to pay $1 to wear a purple shirt or $2 to wear a purple shirt and jeans.

Pamela Brady

These donations will go toward the costs associated with driving back and forth from Houston for six to eight weeks, but Brady is more concerned with raising awareness than funds. She plans to create a Facebook event inviting the local community to wear purple Oct. 3 in support of Penny.

“It would mean a lot for Penny to see everyone wearing purple and knowing it’s for her,” Brady said. “Purple is the Rett awareness color, and it’s also Penny’s favorite color, which she was able to tell me with the help of her eye gaze device.”

Brady said she is fortunate that Penny is growing up in a day and age with technology that allows her to communicate and hope for a cure to be discovered in her lifetime.

Still, it does not erase the pain Penny endures wanting to talk, play and interact while being trapped in a body that does not allow her to do so.

Brady’s biggest hope for “Purple for Penny” is people will learn more about Rett Syndrome and understand Penny’s disability does not erase her intellect or personality.

As for her treatment, the goal is for Penny to regain enough hand dexterity to make communication easier, even if only temporarily.

“She deserves a breakthrough, even if it’s just for six weeks,” Brady said.

She is confident the community would be willing and happy to participate in her awareness efforts.

“She’s made an impact in the community. People who see her remember her,” Brady said. “We are really, really blessed to have been the recipients of so much kindness.”

People have gone out of their way to show kindness to Penny, according to Brady. A few good deeds include the LaPlace Winn-Dixie purchasing a special shopping cart, a caring stranger giving her a bike she can ride and a neighbor making her a weighted blanket to meet her sensory needs.

Brady’s other plans for the next few months include hosting a fundraiser Dec. 8-9, which will include a poker run, dart tournament and raffles. She is also selling purple awareness T-shirts for $20 each for people to order at any time.

For more information on how to support Penny, message Pamela Brady on Facebook.

— By Brooke Robichaux