Sophia Kalem
When Mary Rose and Craig Kalem went looking for support for their daughter, Sofia, they never knew how much help they’d also find for themselves.
As their newborn baby refused to respond to light or sound, Mary Rose and Craig were devastated by the possibility that their daughter was both blind and deaf. Referred to Junior Blind’s Infant-Family Program, the Kalems were hopeful that early intervention might improve Sofia’s future.
Paired with Infant-Family Specialist Vilay Ortega, the Kalem family felt an immediate connection to her.
“It was obvious from the very beginning that Vilay kept all her students constantly in her mind and in her heart,” says Mary Rose.
But more than just concern, there came results.
Twice weekly, Vilay would visit the Kalems in their home, introducing the therapeutic activities that she hoped would help stimulate and strengthen Sofia’s other senses. Astoundingly, as Sofia slowly began to respond, it became apparent that she could indeed see and hear.
Doctors confirmed, however, that Sofia did suffer from strabismus, a condition where the eye muscles fail to work together to properly align the eyes—interfering with vision and potentially leading to permanent vision loss without proper interven-tion. Sofia was also later diagnosed with Phelan-McDermid Syndrome, a rare genetic disorder that was causing her to experience severe developmental delays. For example, as Sofia grew older, she was encoun-tering great difficulties learning how to walk, talk and eat.
Despite the ever-changing obstacles, Sofia’s therapy always managed to stay on target.
“Vilay was fantastic at finding activities that matched Sofia’s abilities, yet, at the same time, challenged her just enough to keep building her progress,” Mary Rose elaborates.
Even more, Vilay was always eager to try to incorporate the skill sets Sofia was working on with her other therapists—speech, motor, self-help, among others—into her own sessions.
As Mary Rose explains, “It wasn’t just about our daughter’s vision. It was about the whole child.”
Not to mention, the whole family. Vilay made certain that Mary Rose, Craig and even Sofia’s brother, Nicolas, were actively learning how to engage Sofia on their own. Vilay would also accompany the Kalems on visits to physicians, listening firsthand to what the doctor had to say and using his or her advice to guide future therapy.
And when Sofia turned three, Vilay helped prepare the Kalem family for their daughter’s transition from home to preschool. In particular, Vilay joined Mary Rose and Craig as they met with teachers to discuss Sofia’s Individualized Education Plan (IEP), sharing her insight on Sofia’s needs and suggesting accommodations that could be made in the classroom to help Sofia learn better.
But, above all, Vilay provided much-needed friendship.
“When a parent has a child facing so many challenges, it is very hard not to feel alone,” shares Mary Rose. “Having the one-on-one support of someone who is actively working to better your child’s life is just wonderful.”
While the Kalems recognize that there is still a journey ahead of them, they are most grateful to have been able to involve themselves with the Infant-Family Program and look forward to the opportunity to continue on with our Early Childhood Program.
“Looking at our daughter now, you would never know that she was the same child that first entered the Infant-Family Program four years ago,” Mary Rose says. “Sofia has made such great developmental progress, and I believe early intervention has been the key to her success.”
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