Above: The Craft Family’s new home given to them by ABC TV’s Extreme Makeover: Home Edition. Right: Bella, age 3; Elizabeth; Samantha, age 11; Sarah, age 8; Todd Joseph, age 1 ; and Todd Craft stand by William’s memory box in their new living room.
Texas Scottish Rite Hospital for Children (TSRHC) patient Isabella “Bella” Craft has experienced many miracles in her short life. Born with alobar holoprosencephaly (HPE), a condition that occurs during the first few weeks of pregnancy and in which the fetal brain does not grow and divide normally, Bella was not expected to live past birth. Now age 3, Bella has been treated by Dr. Mauricio Delgado at TSRHC in Dallas since she was 10 months old.
“Since 1998 the hospital has been collaborating with other centers that are part of the Carter Center network with the ultimate goal of finding the cause of HPE,” said Dr. Delgado. “This consortium of sponsored centers focuses on improving the lives of children diagnosed with holoprosencephaly.”
The efforts of the Carter Centers across the nation mean the world the Bella’s family.
“Dr. Delgado ordered tests that had never been performed on Bella,” said Mrs. Craft. “Everyone at the hospital truly cares about Bella, and TSRHC saved her life.
Todd (or “Coach”) and Elizabeth Craft, Bella’s parents, live in Hondo, Texas, about forty miles west of San Antonio, with their children Samantha, 11; Sarah, 8; Bella, 3; and Todd Joseph, 1. Son William, died shortly after birth in 2002.
Todd Craft is a year-round coach for football, baseball, and girl’s basketball at D’Hanis High School in Hondo as well as a teacher of health and speech. More than a coach, he is a mentor, motivator, and inspiration to the student and faculty at D’Hanis. Knowing about Coach Craft’s challenges at home, the students and faculty at his school nominated his family for ABC TV’s Extreme Makeover: Home Edition, a national television series that builds homes for special families.
“One of the biggest challenges in our house was bathing Bella as there was not enough room in the bathroom,” Mrs. Craft said. “We didn’t have space for her therapies and medical equipment, like her wheelchair. Another big problem was that Bella had to share a room with Sarah.”
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| Todd Joseph and Bella play with the bubble tube in Bella’s new therapy room. Bella’s favorite toy in her new therapy room provides stimulation with lights and colors. |
The ABC film crew surprised the Craft family by arriving at their home early the morning of March 5 to send them on vacation to Huntington Beach, California, while their new home was being designed, constructed and furnished by the ABC design team and community volunteers.
The Craft family shared their connection with and appreciation for TSRHC with the ABC film crew, and two designers and a production crew visited the hospital to learn more about Bella’s condition. Dr. Delgado, other patients with HPE, Jessica Leal, age 9; Danny Mitchell, age 19; Chance Urschel, age 10; Tracie Williams, age 5; and their families participated in interviews with Extreme Makeover designers Tanya McQueen and Eduardo Xol in the Dr. Bob and Jean Smith Child Life Center at TSRHC.
The families related their own challenges and solutions from firsthand experience with their children. They even brought pictures to show the designers therapeutic equipment they use and discussed items that would help stimulate Bella’s mind. Dr. Delgado explained Bella’s condition to the designers and showed them images of her brain. Input from the families and Dr. Delgado gave the design team new ideas for Bella’s therapy room.
Before leaving the hospital, the designers presented Dr. Delgado and TSRHC with a plasma-screen television, courtesy of Sears, which will be part of the educational theater in the Boone Pickens Conference Center at TSRHC. The theater will serve as a forum to inform visitors about the history of TSRHC, current patient success stories, services offered at the hospital, and research initiatives.
“It was an honor to be a part of the show, and ABC made a big difference in not only Bella’s life, but to the entire Craft family,” Dr. Delgado said. “We appreciate the gift of a new plasma TV for our new conference center. Bella is an inspiration to us all, and I am so proud that her family was chosen for ABC Extreme Makeover.”
TSRHC staff members made a special visit to the construction site of the Craft’s new house in Hondo, surprising the work crew with TSRHC popcorn tins, bandanas, banners, and a framed letter “B” made out of crayons for Bella’s therapy room. Upon their arrival to their new home on March 12, the Craft family drove up to thousands of people lining their street. Anticipating the sight of their home after a week-long vacation, the magic words, “Move that bus,” were yelled, and the family laid eyes on their newest miracle.
“The first thing I noticed was the gorgeous rock exterior; it’s something I have always wanted,” Mrs. Craft said. “And, next, the beautiful, manicured lawn. The defining moment of the entire experience was when we saw Bella’s room and realized that life wasn’t going to be so hard anymore,” Mrs. Craft said. “Bella has progressed so much since we moved back in. She is actually mobile now, rolling all around on her foam floor. Her favorite multi-sensory toy is a six-foot, water-filled tube. When turned on, you see colored lights as thousands of bubbles rise from the bottom. She loves to lie next to it and experience the visual stimulation from the bubbles and colors.”
The Craft family continues to make annual trips to see Dr. Delgado at TSRHC, their home away from home.
“We can’t wait to get back to TSRHC and see everyone,” Mrs. Craft said. “The hospital has been such a big part of our lives, and it is mind boggling that all the treatment at TSRHC is free of charge. They gave us hope when no one else would, and we were so happy to know there was not only a place to take Bella that provides care for her specific condition, but they also do research to make a difference for future families.”
The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations is a collaborative initiative among sponsored Centers of Excellence in the field of holoprosencephaly (HPE) including Texas Scottish Rite Hospital for Children in Dallas, Kennedy Krieger Institute in Baltimore, Stanford University at Stanford, Rutgers, The State University of New Jersey in Newark and the National Institute of Health in Bethesda. The goal of the Carter Centers is to evaluate and treat as many patients afflicted with HPE and their families as possible in order to improve lives and conquer this disorder. To learn more about HPE, please visit www.hpe.stanford.edu.
Texas Scottish Rite Hospital for Children in Dallas, Texas, is one of the nation’s leading pediatric centers for the treatment of orthopedic conditions, certain related neurological disorders, and learning disorders, such as dyslexia. There is no charge to patient families for treatment at the hospital, and admission is open to Texas children from birth to 18 years of age. For more information, to volunteer or to make a donation, please call (214) 559-5000 or (800) 421-1121 or visit www.tsrhc.org.
