They came to Gillette Children's with twice the hope. Twice the dreams. Twice the determination.
The Bracho Diaz family left their native Venezuela eager for another round of expert care for their 10-year-old twin daughters Maria de los Angels and Maria Antonieta. Yes, identical twin sisters who share the name Maria and a diagnosis of spastic quadriplegia cerebral palsy.
The family’s connection with Gillette began back in 2013 when Maria D, as her family calls her, had selective dorsal rhizotomy surgery (SDR) and Maria A had hip surgery with pediatric orthopedic surgeon, Tom Novacheck, MD. The Bracho Diaz family first “met” Novacheck during a telemedicine conference in 2012. Their doctor in Venezuela received training from Novacheck and thought Gillette could provide more specialized care for the girls. Their parents, Nixon and Marilyn Bracho Diaz agreed and the family spent six weeks at Gillette.
The first surgeries at Gillette were beneficial for both girls. “When Maria D first came to Gillette she couldn’t really stand and both her hands were clenched. After her selective rhizotomy surgery she’s standing better, learning to walk and she has more movement and control of her hands,” Marilyn Bracho Diaz says through an interpreter. This success made it easier for the family to decide to return to Gillette so Maria A could also have selective dorsal rhizotomy surgery.
Selective dorsal rhizotomy surgery is a long and complex procedure but it often results in helping patients achieve better mobility and independence. The surgery treats spasticity caused by abnormal communication among the brain, spinal cord, nerves and muscles. During the procedure surgeons cut the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles. Typically patients, like Maria A, are hospitalized in the Gillette inpatient rehabilitation unit for about six weeks. It’s a big commitment for the entire Bracho Diaz family to leave their homeland and relocate to Minnesota. “It’s totally worth all the sacrifice,” Marilyn Bracho Diaz says.
The Bracho Diaz family is grateful for the care and support of the doctors and nurses at Gillette. “We feel lucky because many of the staff members at Gillette are bilingual and that makes it easier to communicate,” Marilyn Bracho Diaz says. She’s especially thankful for Gillette Spanish interpreter, Andrea Zehrer. “She makes our time at Gillette so easy and she’s so helpful.”
Family Love and Support
The twin girls have an older brother, Tixson, and an older sister named—you guessed it—Maria. Nixon Bracho Diaz, the girl’s father, says it’s a tradition on his side of the family to name the girls after their grandmother so that’s why all three of his daughters are named Maria. The family stays in a hotel in a St. Paul suburb so they can be together as Maria A and Maria D spend time at Gillette.
While Maria A recovers from her surgery it’s a good opportunity for Maria D to participate in many therapy sessions at Gillette. Maria D has daily sessions with physical therapy, occupational therapy, and aquatic therapy to help her gain strength and control of her muscles.
Maria D works hard and is motivated by her twin sister’s progress. “Maria D has a more involved form of cerebral palsy,” Marilyn Bracho Diaz reports. “Some days Maria D will feel a little down and say, ‘why can’t I walk as well as my sister can walk? I work hard too?’ I tell the girls that God gave them both a gift when he provided us with the opportunity to come to Gillette. Our job is to make the most of this gift and try our best.”
“I also remind the girls that the only way to achieve things is to work hard,” Marilyn Bracho Diaz explains. “I can see them working hard in therapy and I have strong hope that they’ll be able to achieve great things.”
Birthdays and Baseball
Both Marias say their time at Gillette is tiring but rewarding. “We’re very busy all day,” Maria D says. “I feel lucky that I’m going through all of this with my sister. We understand each other and help to motivate each other to do our best.”
When she returns to Venezuela, Maria A has some very specific plans. “Now that I’m stronger, my goal is to bake brownies with my mom and help her wash the dishes,” Maria A says. “I’m looking forward to doing simple things with my mom.” Her mother beams and says, “That sounds good to me!”
During their stay at Gillette there was a double birthday celebration when the twins turned 11 in April. The girls enjoyed their mom’s homemade birthday cake and looked forward to watching a Twins baseball game on television. The Bracho Diaz’s are now big Twins fans. The girls grew up around baseball because Nixon Bracho Diaz’s father, grandfather to the Marias, owns a baseball team back home in Venezuela. “Baseball is a way for us to connect as a family,” Marilyn Bracho Diaz says. “It’s a nice distraction for the girls and a little bit of home when we’re in Minnesota.”