Our Stories

Mark and Priya

When Mark Trombino and his wife, Anu, learned they were going to have a baby, they were ecstatic.The probability that their daughter would have dwarfism did not dampen the excitement of the new parents-to-be. Both parents had a lifetime of experience as little people, and they felt fully prepared as knowledgeable advocates to help their daughter deal with challenges related to short stature. “We knew going into it that she would probably inherit our form of dwarfism,” said Mark. “We were more concerned with making sure that she was safe and secure.” It turned out, their concerns were justified.

Though Priya did have dwarfism, greater issues were that she was born prematurely and had trouble eating. She was hospitalized in the Neonatal Intensive Care Unit for the first ten days of her life. Mark quit his job to stay at home with her full-time when she was able to leave the hospital.

After the initial bumps in the road, the family was on a smoother track for a while. Then the call came that shattered their world. Anu was in a car accident on her way home from work. Her injuries were extensive, and a lengthy treatment program ensued that included moving Anu to a hospital in Denver for specialized services. After months of struggle, her return home seemed to be in sight, but a sudden change resulted in Anu’s death.
Mark faced the loss of his soul mate, the family’s primary financial support and the challenge of raising his daughter as a single father. Knowing Priya depended on him, Mark rallied strength and skills he developed in his youth.

When he was a child, Mark’s mother, Betsy Trombino, was one of the first coordinators for a new program called Pilot Parents (eventually changed to Raising Special Kids) which focused on helping families of children with disabilities gain the skills needed to be successful advocates for their children. Surrounded with strong support from family and friends, Mark developed remarkable resilience that he was able to draw from as he began to rebuild a life for himself and his daughter. He recently remarried, and the new couple is focusing on their dreams for the future and the daily challenges and triumphs of raising a young child.
Priya is now four, and Mark is facing a new set of challenges. “She’s faster than I am,” he laughed. “She likes to run and it’s hard for me to chase her down.” Priya is able to do many of the things that a typical four-year-old does, but she is also starting to realize that she’s a little person. Mark’s firsthand experience of growing up with dwarfism is a valuable tool he will use to help Priya as she grows older. The proud father states: “The sky’s the limit for her. I know little people in all types of fields. I don’t want to restrict her at all — anything she wants to do, I want her to do it.”

Mark is an experienced actor with a positive outlook and an infectiously friendly personality. Drawing on his experiences, he began speaking in public motivational forums. He has co-authored a book and launched a career as a motivational speaker presenting at schools, churches, and other events on dealing with bullies and overcoming life challenges. He also volunteers with Raising Special Kids as a Family Faculty hosting medical residents in his home to share his perspective as a parent raising a child with a disability.

Becoming a father has been a lifelong dream for Mark, and he is thrilled at the experience. “Having a child has changed my life,” Mark says. “The challenge isn’t that she has dwarfism, it’s that she’s my daughter. But the rewards are so great, they far outweigh anything we’ll face.”

Leticia

Leticia Gloria-Cervantes helped break through some old stereotypes and change current perspectives of people with cognitive disabilities when she started full-day kindergarten. Her mom, Theresa, boasts, “I would do this experience 100 times over. I became a better person because of Leticia.”

Theresa found help and support through Raising Special Kids after the birth of Leticia, who has Down syndrome. “You have helped me to realize that the way you present your child to the world, is the way the world will perceive your child.”

Theresa encourages families to learn as much as they can about their child’s disability. “What we don’t understand, we become fearful of,” she said.

Theresa enjoys an active role as a Parent-to-Parent volunteer, and as a member of the Family Faculty. She noted “I receive the greatest pleasure in helping other Hispanic families walk this journey.”

Patrick

Patrick can usually be found surrounded by his favorite books, filled with stories and colorful pictures about fantasies, says Amy Bonner. Patrick suffered a brain injury when he was 10 months old and has cerebral palsy. After receiving Patrick’s diagnosis, Amy and her husband didn’t know what to expect. “We learn as we go along,” she reflects. “We just adapt as needed.” Amy became an expert on her son’s therapies, and advises parents to live life as normally as possible.

After meeting with staff at Raising Special Kids, Amy was given suggestions about how to set up Patrick’s IEP (Individual Educational Plan) as he entered Kindergarten. “Patrick has been mainstreamed in school. The assistance we received from Raising Special Kids helped to get what we felt was best for our son. We feel we’re very lucky.”

"I wish we had learned about Raising Special Kids sooner," added Patrick's father Kevin Bonner, now a member of the Board of Directors. "Raising Special Kids provided invaluable information about educational options. But the staff and volunteers provide so much more than that, including Parent to Parent support for families who have just learned their child has a disability. I wish I had known about that support network when Patrick suffered his injury."

 
Lainee

It was two and-a-half months before Cee Cee Tassinari could bring her infant daughter, Lainee, home from the hospital. “She was in Neonatal Intensive Care and required a lot of care to help develop her premature lungs,” reflects Cee Cee. “We thought we were out of the woods when we finally brought Lainee home, but that was just the beginning of our journey.”
While waiting for surgery, Lainee “coded.” Later, Lainee was diagnosed with cerebral palsy and visual impairment. “I was given the number for Raising Special Kids, and they connected me with another family. ” Cee Cee remembers her Parent to Parent connection, “It was so wonderful to talk to someone who knows there is hope.”
Cee Cee was so inspired by her experience that she decided, “There was someone out there who needed my help.” The experience with Lainee inspired her to want to share with other parents. “I tell them, don’t give up, stay positive, even on those toughest days,” she advises parents as a Parent to Parent volunteer. 
Today, Cee Cee looks back and says it’s been a remarkable experience. “We are so lucky to have Lainee.”

Teresse

Twila Pochoema discovered Raising Special Kids while taking a course on advocacy. She began as a Parent to Parent volunteer giving support to families and then became a liaison for Raising Special Kids to the Hopi Tribe.
“We have used many of the services to help us with our daughter, Teresse: special education consultation, advocacy training, and guidance in locating resources—which can be difficult to find in rural areas like ours,” said Twila. “When we received a diagnosis for Teresse, all our expectations for the future were turned upside down. But learning more about our daughters’ disability has been so helpful for our family. Our older children have become advocates within their own peer groups for other people with
disabilities as well.”
Twila’s efforts in helping to form the Turtle Nation Partnership, a parent advocacy group, has brought many families together and increased awareness. She noted her personal growth as well, “I’ve learned to speak in front of groups comfortably and change things for our community.”