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.
Heather Thornbury: Apopka
Heather Thornbury, mother of two, says miracles do happen, because she and her family have seen them and lived through them.
When her firstborn daughter, Arden, became ill at six weeks old, Heather and her husband Dale were told that in order for their child to survive, Arden would need a heart transplant when she reached three months of age.
“It was earth-shattering,” recalls Heather. “Once it sunk in, we immediately realized that in order for Arden to survive, another family would have lost their loved one, their child. We prayed that whatever family was faced with that tragedy, they would see the miracle of life that could be passed on and make the selfless decision to prevent another family from experiencing that pain and loss.”
Today, Heather shares Arden’s story with the world in an effort to bring factual, relatable awareness to the cause of organ donation.
“The vital need for donors is astounding,” says Heather. “Too many people die waiting for their second chance at life. If more people were simply registered to be organ donors or shared their wishes with their family, more lives could be saved.”
Heather spreads awareness by speaking for TransLife, the local organization that coordinates organ donation, or sharing Arden’s story and journey on social media. Heather also sells custom-designed T-shirts, which are worn at the annual Gr8 to Don8 Walk/Run every April, and donates the proceeds to TransLife or other organ donation organizations. During Organ Donation Awareness Month (April) or National Donor Day (February 14), Heather is sure to post facts and statistics via social media and provide direct links to help people register to become organ and tissue donors.
“Passing on the gift of life is such a miracle,” says Heather. “It often brings peace to loved ones left behind during such a difficult time, knowing their lost loved one lives on in others and has possibly saved up to eight lives. They have become heroes.”
While Arden’s heart transplant was a success, she also faces many obstacles due to a subsequent mitochondrial disease. However, Heather says that Arden, who celebrated her fourth birthday in July, continues to do amazingly well with her new heart that is “strong and meant for her.”
Heather, Dale, Arden, and little sister Brynn also celebrate a Happy Heart Day each year in honor of the unforgettable day when Arden was given a second chance in life.
Pam Boodram: Longwood
If you know Pam Boodram, you’ve likely 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 epilepsy. 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 Sabrina’s epilepsy, she 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.
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