Izzy and Gabby are 7-year-old sisters who have more in common than being twins! They enjoy spending time in the great outdoors and hiking as a family at state parks. While Izzy is more interested in animals, Gabby’s focus is on climbing anything she manage to reach. With an unbreakable bond, they rely on each other as they take on life with tuberous sclerosis complex (TSC).
Delivered prematurely, Izzy and Gabby spent a month in the NICU receiving tests, such as CT scans and MRIs. Doctors found brain tumors and rhabdomyomas, a benign tumor that clusters in the heart, in both twins. Izzy and Gabby were quickly diagnosed with TSC.
TSC is a rare genetic disease that causes tumors to grow in various organs, like the brain, heart, kidney, eyes and lungs. Although there is no cure yet, early diagnosis and intervention is proven to help manage the condition effectively.
After researching options, Izzy and Gabby’s family relocated from Montana to Big Sandy, Texas, to receive care from TSC expert Steven Sparagana, M.D., and his team at Scottish Rite for Children. Since TSC varies in each case, creating personalized care plans for Izzy and Gabby were key to helping them reach their goals and get back to enjoying their childhoods. Dr. Sparagana is now retired, but experts in our Neurology and Rehabilitation Medicine department continue to conduct research to advancing treatment methods for this condition and have specialized experience in the management of TSC, making care at Scottish Rite a top choice for Izzy and Gabby’s family.
“We acted purely on faith,” says Izzy and Gabby’s mother, Danys. “We felt like this was the best chance to find answers, and this was the best decision we ever made. God answered our prayers with the team at Scottish Rite.”
Izzy’s case of TSC was more strenuous on her health than Gabby’s when the girls were babies. Both sisters started having seizures shortly after their first birthday. However, Izzy averaged between eight to 12 seizures on her worse days, while Gabby experienced around one to two seizures a day.
“While Gabby was developing and learning,” says Danys, “Izzy was sleeping her days and nights away due to the physical exhaustion from the seizures.”
Treatment methods for TSC are continually evolving, and ongoing advancements are improving TSC patients’ quality of life. Gabby’s current treatment includes medication to control her seizures. Izzy’s seizures have also improved with medication after neurologists found her seizures resembled infantile spasms, which are shorter forms of a seizure and are typically seen in infants under 12 months old.
As they continue treatment, Izzy and Gabby rely on their Scottish Rite care team and family for ample support as they grow. Since starting their new medications, the twins have not experienced any more seizures. Through careful monitoring and support, Izzy and Gabby make more and more improvements. While their journey isn’t over, they are on the right track. Now, they focus on exploring new activities! Izzy is part of a cheerleading team, and Gabby is in gymnastics.
“It’s our family’s goal to one day be on the donor wall,” says Danys, “So we can continue supporting the amazing work Scottish Rite does. The care and treatment our daughters received is crucial to how they are thriving in the ways they do now.”
Izzy and Gabby, we are so proud of your growth and cannot wait to see what adventures you two embark on next!
