Four-year-old Rachel Steele's feet dangle, while the rest of her is tucked securely into her mother's arms and lap.
She is taller and heavier than her twin brother, Nathan, who plays nearby on the floor with plastic power tools, building an imaginary multi-layer pizza.
Rachel cries, then calms and even smiles. She experiences life differently than her brother. She was born with holoprosencephaly, more easily known as HPE. HPE is a disorder in which, during development in the womb, the brain fails to divide, causing defects in the development of the face, brain structure and function.
Every day, Rachel and her family face new challenges. Medical textbooks say that most children with HPE don't live beyond six months and many more die in miscarriage or at birth.
However, a growing number of children with HPE are like Rachel, defying the odds, and their parents have united through a support and educational group known as Families for HoPE.
Rachel's mother, Roxanne Steele of Richmond, is one of the founders. She has helped organize the group and a family weekend conference in Indianapolis that started Friday and concludes Sunday.
"The families have found support. We have participants (online) from all over the world," Roxanne Steele said. "The biggest thing we have found is the misinformation that's given to families."
Roxanne and her husband, Brian, were told when the twins were born that Rachel might only live six to eight months. She and Nathan celebrated their fourth birthday March 29.
Reaching that milestone hasn't been easy.
After Rachel was born at Reid Hospital, she began to have seizures. At three days old, she was transferred too the neonatal intensive care unit at Riley Hospital for Children in Indianapolis and at five days old the HPE diagnosis was made.
"It was a rough few weeks," Roxanne Steele said.
Rachel's HPE is defined as semi-lobar, or moderate. She has multiple disabling conditions including abnormal brain function, cerebral palsy, seizures, and a cleft palate. Her body is not able to regulate its own temperature or concentrate water well in her kidneys, which are regulated by taking hormones.
"It's amazing what modern medicine has done," Roxanne Steele said.
Rachel requires medications seven times a day, receives intensive percussion and breathing treatments every four hours, averages about eight hospitalizations each year and regularly sees 12 specialists at Riley Hospital. Home healthcare assistance through the Medicaid waiver program helps the family care for Rachel.
"Without it, I don't know where we would be," Roxanne Steele said. "Rachel's care is very intense."
Rachel and her MRIs also have been evaluated by doctors at the Kennedy Krieger Institute in Baltimore, Md., which is one of five Carter Centers for Brain Research in Holoprosencephaly and Related Malformations.
"We really have no idea what her prognosis is," Roxanne Steele said. "Every day is another gift. Some of it depends on what's God's plan for them."
Rachel's needs have forever changed the Steele family. Roxanne Steele has given up her job as a special education teacher at Test Middle School and the family's sole income comes from Brian Steele's job as sports health manager at Reid Hospital.
Older daughters Mariah, 11, and Sara, 8, have given up dance lessons and gymnastics, Roxanne Steele said.
"They're just wonderful with their sister. They dress her up, play with her. Rachel just loves them," Roxanne Steele said.
Nathan often plays with Rachel, sharing his play as she sits securely in a special seat. Otherwise, she has difficulty sitting up or holding her head up.
He said his favorite thing to do with Rachel is swing in their backyard.
"It's been such an amazing learning experience, living with Rachel," Roxanne Steele said. "She enjoys her family and we learn so much from her."
She, her husband and their children have learned compassion, patience and understanding that she knows will make a difference in the lives of her children as adults.
"Going to McDonald's, it's amazing how many people look at Rachel and then turn away and won't even look at her, won't hold the door for us," Roxanne Steele said.
The changes in their life have given the Steele's a stronger sense of faith and they receive good support from their church, First English Lutheran Church.
"It's really drawn us back to what's important," Roxanne Steele said.
That's why the HPE family weekend in Indianapolis is so important.
Leslie Harley of Indianapolis, whose three-year-old son Sam has HPE, is among the leading founders of the Families for HoPE group, along with Roxanne Steele.
Sam's HPE was diagnosed before birth and the Harleys sought information and support from the Steeles.
"My hope begins with my faith, but it also comes through my connection with other mothers and families who are directly affected by HPE," Leslie Harley said in a recent letter about the family weekend. "The online families I have found have become my extended family. They understand exactly how I'm feeling and they know my struggles first-hand. Without these families, I would have felt very isolated and alone."
The conference is bringing together 26 families from across the country, with children ranging from infants to age 19. Although they are not all able to attend, there are at least seven such families in Indiana, Roxanne Steele said. There are even some families attending whose child with HPE has died.
The activities are aimed at giving the families a break and supportive friendship. For father, for example, the Indianapolis Motor Speedway is offering the dads a chance to visit the famous track, special craft and discussion time for the mothers, a Sibshop offered by Easter Seals for siblings of special needs children, a visit to the children with HPE by a service animal, a celebration of all holidays, and a question and answer session with Dr. Eric Levey of the Carter Center at Kennedy Krieger Institute in Baltimore, Md., which specializes in HPE.
Roxanne Steele said Indianapolis' racing community has been generous with its contributions to the event and St. Vincent Children's Hospital is paying for the families to stay at the Marten House. She said Richmond doctor Debra Bright and the Richmond Apothecary also have made donations to the event.
"We really wanted this weekend to be about the families and supporting each other, and putting faces to the names we see on e-mail," Roxanne Steele said.
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