Sasha's Story: Today
Sasha came to St. David’s Center at the age of two, not long after her parents learned she had a rare gene mutation known as DDX3X. This condition—at the time only identified in sixty people worldwide—caused delays in Sasha’s physical and intellectual development including low muscle tone and significant speech delays.
Irena, Sasha’s mother, was very concerned about finding a preschool that would not only support Sasha’s needs, but accept who she was. “When I came here initially, I didn’t know where she would belong,” remembers Irena. “I wasn’t asking for special treatment, I just wanted her to be included.”
“Sasha has always had a drive and curiosity for the world around her,” shared Mariel, her occupational therapist. “It was easy to harness that motivation to help guide Sasha’s growth in self-care, play, and motor development and exploration.” Irena and Dmitri were so impressed with the support Sasha received at St. David’s Center that they transferred her twin brother, Leonard, to the early childhood education program as well. Leonard, a typically developing child, has also benefitted from the inclusive environment and the convenience of having both children in one place was important to Irena. “It was a no brainer for us,” she remarks.
Now six-years-old, Sasha is thriving in Kindergarten at her public school. She still receives speech and occupational therapy, and her therapists say she just keeps progressing. She knows all the letters and numbers and can even write her name. Moreover, she has integrated socially, which is such an important part of being able to function in a school setting. “After two years of speech therapy, Sasha’s overall language skills are close to that of her peers,” explains speech therapist, Katie. “She is able to form relationships and play and has a lot to say in conversations!”
At St. David’s Center, Sasha was enrolled in speech therapy, occupational therapy, and the inclusive early childhood education program. “To have everything she needs in one building was a blessing. I don’t know how anyone would manage otherwise,” shares Irena.
Today, there are now 350 confirmed cases of the DDX3X mutation and a lot more research being done to understand the effects on development. No one, however, has Sasha’s exact mutation, so it has been difficult for her parents to gauge her development. Irena found support through a Facebook group and attends an annual reunion with other “DDX3X families.” She has learned from families in other states that a place like St. David’s Center, for children with special needs to learn and receive therapies under one roof, is not common.
As full of life as ever, she loves to swim and be in the water—an interesting preference of many of the girls who have DDX3X. Sasha also loves to color, and especially loves Disney characters and dressing up for Halloween. More than anything, she loves making friends. “She’s got friends everywhere!” shares Irena. “We were at a birthday party recently, and when we got there, four or five kids ran up to her and said, ‘Sasha, come play!’”
At times, Irena and Dmitri still worry about Sasha’s future, with so many unknowns ahead. But the network of support and acceptance they have found at St. David’s Center over the past four years, along with the smile on their daughter’s face, gives them great peace of mind. “She would wake up and want to go to school, even on Saturdays,” laughs Irena. “She loved St. David’s Center.”
Read Sasha’s original story here.