When children battle a life-threatening illness, their parents must summon
immense strength in the face of unimaginable fear. But as they fought for their
own kids, these local moms also answered a call to help other parents, families,
and the community band together to be brave as one.
Donna Marques - Lake Mary
Even when a medical battle ends in tragedy, a parent’s mission to advocate for their child often continues. For Donna Marques, her call to action only grew stronger as she sought to help other parents who face a long and uncertain road ahead.
This past June, Donna invited friends and family to join her in a balloon release at the memorial site of her daughter Emma, who would have turned seven years old. On February 3 of this year, the beautiful and courageous little girl, who was loved and supported so much by her community, lost her battle to Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable and aggressive brain tumor. Emma was diagnosed with DIPG in March 2014 and fought the tumor for 22 months.
While Emma’s family has suffered the worst loss imaginable, her mother continues to keep Emma’s memory alive by raising awareness of DIPG in any way she can. Donna uses the Hope for Emma Facebook page and Hope4Emma.com to share memories of her daughter and to remind the world that this vicious childhood cancer needs more attention. Donna also provides educational material and links to websites where donations can be made to DIPG research.
When Donna first learned Emma had DIPG, she educated herself in every way she could about her daughter’s tumor. She received a binder filled with information, and she dove full force into additional research.
“I would stay up until 2:00 a.m. researching and studying the medical terminology – it was almost like starting a career you don’t want to be a part of,” says Donna, who now shares as much as she knows about this cancer with the hope that it will help other parents and stimulate the medical research attention DIPG deserves. “I want people to know that there is a terminal childhood cancer out there that only affects kids between the ages of five and seven. There have been so many advancements on different types of cancers, and because DIPG is so rare [about 300 children are diagnosed per year], it is not researched enough.
Doctors believe that if it was funded more, they may be able to stabilize it.”
The most devastating statistic is that DIPG has a zero percent survival rate.
“With other childhood cancers, kids have a chance to live; not this one,” says Donna. “This one has a zero percent chance, and that’s where the funding needs to be put.”
Emma was able to fight the cancer for 22 months, surpassing the average survival expectancy of 9-12 months.
Recently, Donna helped raise money for a Defeat DIPG Superhero Sprint and 6K race in honor of Emma and many other families whose children are fighting DIPG. While Donna continues to spread awareness about DIPG, her main focus is on rehabilitating her life with the absence of her unforgettable daughter and princess warrior, Emma, who lived life to the fullest.
Pam Boodram - Longwood
If you know Pam Boodram, you’ve likely already learned a few facts from her about epilepsy. For instance, you’ve learned that November is Epilepsy Awareness month. You know that the color purple represents epilepsy awareness and that on March 26 you’re invited to wear that color in support of the cause. You know all this because, for the past six years, Pam has done an incredible job advocating for her seven-year-old daughter Sabrina, who is living with epilepsy.
Doctors confirmed Sabrina’s epilepsy after she suffered seizures at nine and ten months old. At the age of four, Sabrina was diagnosed specifically with Dravet syndrome, a genetic condition of the brain that causes frequent and frightening seizures.
“There is no cure for this condition, and many children with Dravet syndrome live with severe medical complications or will unfortunately lose their battle with this debilitating condition,” says Pam.
Sabrina, however, is fortunate that she doesn’t have the same complications as others. Today, the family handles Sabrina’s current struggles and celebrates each and every success.
Sabrina’s epilepsy also brought Pam and her family close to other families through the Epilepsy Association of Central Florida (EACF).
“No one has the same exact type of condition that Sabrina has, but they can all relate to our feelings, fears, and joys,” says Pam. “It helps so much to know that we aren’t alone. There have been many times that I have reached out to the other moms for comfort about Sabrina.”
Pam also makes it a point to share Sabrina’s story with friends via social media to help educate others in the process. During the month of November and on March 26, she and husband Damon ask everyone on Facebook to wear purple and post a picture to support the millions of people like Sabrina who live with epilepsy every day.
“Everyone knows about Pinktober [the tradition of wearing pink in October] for breast cancer awareness, but not enough people know that the color purple represents epilepsy awareness, which is why we try to educate anyone we can,” says Pam. “If we each tell one person why we are wearing purple, then they can tell someone, and so on. Our hope is that people are better informed about epilepsy and will spread awareness to others.”
In addition to helping raise money through EACF for those living with epilepsy, Pam takes time to educate students at the high school where she works as a counselor.
“When the AP psychology students begin to study epilepsy in their class, I show them a video we made about Sabrina when she was younger, and I talk about how it affects our lives,” Pam explains. “The students always have great questions.”
Pam wants parents to know that, despite her epilepsy, Sabrina is just like any other seven-year-old. She loves to dance, sing, swim, and play with her friends.
“Epilepsy isn’t something that is contagious, so parents and teachers need to know not to shelter other children from those who battle epilepsy. I want Sabrina’s teachers to not only be aware that she has epilepsy and some disabilities, but also understand that she is a really sweet girl who wants to learn what they have to offer. She just may not be able to get it as quickly as others or in the same way as they do.”
Last July marked a one-year celebration that Sabrina has remained seizure-free.
Want More Information?