CNJ+ March 2023

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Sadie has received Early Intervention since she was just one month old. She sees a speech therapist to work on language, occupational therapist to work on fine motor and feeding/drinking skills, physical therapist to work on gross motor, and a devel opmental interventionist for everything in between. It takes her a little longer than typical kids, but so far, she can do lots of the same things as other kids her age, like walking, talking, & climbing, to name a few. It also helps to have older siblings to learn from. Ariella, (4th grade) Drew, (2nd grade) and Elise, (pre-k) were her first playmates and models for everything, and have been Sadie’s biggest cheerleaders, and will, not doubt, grow up to be her greatest advocates. Her EI therapy sessions are all in home but they have supplemented with outpa tient therapy at CHOP, and are lucky to have CHOP so close by in Plainsboro, as there are many medical conditions that can stem from having Trisomy 21. Sadie has been very healthy overall, but they monitor many different body systems, with a variety of specialists to keep on top of it.

MILA BAKIYEV

Congenital heart defects affect about 50% of children with Down syndrome. Other common medical conditions can be vision problems, low muscle tone, blood disorders, hypothyroidism, and are at greater risk for Celiac & Alzheimer’s. It is important to note, although people with Down syndrome may have some medical conditions, they don’t ever have all of them, so with the proper medical team, all can achieve a high quality of life. Students with Down syn drome are considered to have an intellectual and developmental disability and are entitled to a free, appropriate public education through age 21. Research has shown that children allowed to continue being included in the general education classroom make significantly more gains. Many colleges and univer sities now offer specific programming dedicated to serving neurodivergent students. Sadie is on track to enter the inclusive preschool at the Primary School following her 3rd birthday. This is the same program each of her older siblings has attended as general education students. Last year for WDSD, Becca visited both the Primary and Elementary Schools to share about Sadie and Down syn drome with the students. They have received so much support within the community from the early days of their diagnosis through the present, as they send Sadie off to school with her peers. They have learned so much along this journey and can’t wait to see what this sweet girl can do! In 2018, Raisa Bakshiyev, of Millstone Township, was pregnant with twins. The pregnancy was progressing normally. She and her husband Andre picked out names and were both scared and very excited about the coming birth. The girls were born by C-section on Monday, November 19th, at 12am in the morning. Mila was baby A, weighing in at 5 lbs., and Sonya was baby B, weighing in at 6 lbs. 1oz. At 6am the pediatrician came in and told the couple that the nurses were concerned that Mila had Down Syndrome, but that he didn't see any signs of it." He told them that just in case, he would run a karyotype, which is a test for the number and visual appearance of the chromosomes in the cell nuclei of an organism or species. The girls did not need NICU stays, and other than Mila needing some help feeding from a bottle, as she would not latch to the breast, the girls were perfectly healthy. They were discharged on Wednesday. In Raisa’s eyes, Mila was completely healthy, she just had a little bit of a harder time with the breast feeding. The following Saturday, they got the phone call from the pediatrician, that all the cells sampled showed trisomy21. Raisa’s world flipped upside down. She cried a lot, feeling like she lost a child and that the diagnose would change their lives forever. She still managed to breastfeed Sonya and pump for Mila, every 4 hours around the clock. Her husband stayed up at night with them so she could sleep a little more and produce milk. Of course, then came fears of secondary organ complications, but there were thankfully none and she did not need any surgery. As time went on, Raisa cried less and less. “Knowing myself, I probably shoved it down into the depths of my being because resurfacing those feelings was just too painful. I would think, "was it my fault?" I would cry in the car, and apologize to her over and over again, but life went on. I crawled out of my sadness and was there for both my girls. We signed Mila up for Early Intervention, moved back to NJ, so we could be closer to family, and raised our kids,” stated Basia. “When I think of those days, and I go back to those memories, I sink into grief. But then I go home, and see her - for who she really is, and she is not at all defined by her diagnosis. “She is joyful and playful, like any other child, and she is never the equivalent of what my mind has imagined, not even close. I just open my eyes, and see Mila, for Mila. Now she is 4 years old, and she would astound you - because she still astounds me every day. She not only knows all the letters, but can read about 40 words. She knows how to count to 20. She plays and sings and dances,” Raisa noted. “She loves to run and jump, and she has a very gentle, loving, sweet personality (when she wants to be!). She will give out the warmest hugs to complete strangers. She constantly reminds us to slow down in this fast-paced life. Because of her, our other daughter, Sonya, is known in her classroom to be in credibly compassionate and emotionally available and mature. It will always be a challenge, and of course, I will worry; Will she have friends? Will she be included in school? Will she get married? Will she grow up to live independently? Will I outlive her? Will she outlive me and Andre? Who will take care of her?" The best we can do is prepare now for the future, and I have to always remind myself to open myself up to new possibilities, and open myself to her - to create and find community - so that she may always be included.”

30 CNJ+ | FORMERLY THE MILLSTONE TIMES

MARCH 2023