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People On The Move: Bethany McGovern
04/30/2009
LOVING MOM AND CAREGIVER
According to the Tuberous Sclerosis Alliance, “Tuberous Sclerosis Complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs… At least two children born each day will have TSC. Current estimates place Tuberous Sclerosis Complex-affected births at 1 in 6,000. Nearly 1 million people worldwide are known to have TSC, with approximately 50,000 in the United States.”
Five-and-a-half-year-old Colts Neck resident Bella McGovern is one of those children. According to her mother, Bethany McGovern, Bella’s TSC was due to a “spontaneous mutated gene” that causes this disorder. Bethany further explained the complications created by the tumors, sharing that they can cause seizures, cognitive impairment, as well as behavioral issues.
Bethany told Living In Colts Neck that Bella was diagnosed at the time of the birth of her youngest daughter Willow. Bethany and husband Sean have three children: Tatum, 10 years old; Bella, 5 1⁄2; and Willow, age 3. Tatum and Willow have been tested and do not carry the gene.
The disease has taken a toll on the family, but Bethany remains thankful and appreciative of the various initiatives done in support of Bella and the whole family. For instance, Bella’s older brother Tatum’s basketball team, through the Colts Neck Sports Foundation, held a “Bake Sale for Bella.” Bethany said it was absolutely beautiful to see so many thoughtful people come out in support of Bella. “The coaches, Elaine Smith and Pete Vill, set it up, and Joe Lucas was so kind to come out and sign autographs.”
Bethany said that next on tap will be a benefit concert for Bella, “Bella’s Buddies,” featuring Mr. Willis and Friends in a concert for children. It will be hosted on May 9th at the Conover Road Primary School. After that, in June at the Norwood Inn in Avon, another fundraiser will take place.
Bethany is particularly appreciative of everyone’s efforts on her family’s behalf. Most of Bethany’s time is spent as a caregiver. Bella requires a high level of care because of the complications of the TSC. Bella stoically takes her nine medications a day without complaint. Unfortunately, she suffers from epileptic seizures and has been home from school for the past 2 months. (At the time this article as written, Bethany was hopeful that her daughter would be able to visit her friends at least once before school spring break.)
Bella has stayed in the hospital for months at a time, and Bethany said she really does not know what she would have done without the support of her family. She feels that sometimes we forget to thank those who do the most for us; for instance, her mom stayed with the other children while she stayed in the hospital with Bella. She also commented on how protective her son is over Bella, and that she fully appreciates how all her relatives have joined together to help her and Sean.
Bella is set to have brain surgery this June in an effort to control her seizures. Bethany shared that the procedure is a three to four stage process. First the surgeons will implant a brain map to see where the tumors are located. The doctors wait a few days to pinpoint the sites that are affected; then they remove the tumors. The map is then put back to see if any other areas are affected, and they operate again if necessary. The surgery will be done at NYU Medical Center by Dr. Howard Weiner and Bella’s pediatric neurologist Dr. Orin Devinsky – both experts in their fields.
Through Bella’s illness Bethany has become an advocate for people suffering with seizure disorders. She is on the steering committee of FACES (Finding A Cure for Epilepsy and Seizures), an organization dedicated to research. Bethany remains positive, and wants people to appreciate how special Bella is…she is her beautiful angel.
*For more information on the events visit the CNBA website at http://www.coltsneckbusiness.com
STATS
FAVORITE RESTAURANT
Citricos, Bradley Beach
FAVORITE MUSICIAN
Bruce Springsteen
FAVORITE MOVIE
ET
PET PEEVE
people living their lives through their children
THREE PEOPLE YOU WOULD LIKE TO HAVE DINNER WITH
Jennie McCarthy, Mother Theresa, and Pop-Pop Austin Prestia
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