The Whitfield Family
My husband and I gave birth to a gorgeous little girl on a Tuesday in September 2016. We were overjoyed to hear that she was healthy and got wonderful Apgar scores, after worrying endlessly for the previous 4 months. I was followed for a high risk pregnancy. Skyler had some fluid around her heart on our 20 week ultrasound. This was the first of many “signs” for me that Skyler was going to be unique.
From the get-go, Skyler has been a sweet and good-natured girl but we struggled right away with breast feeding and feeding in general. Then noticed a strange noise she made when she was sleeping. After getting opinions from friends and family, ranging from night terrors to attachment disorders, we asked to have a sleep study. The results were terrifying. Skyler has severe sleep apnea. She struggles to breathe correctly about half of the time while she sleeps. Another sign. For the next couple months, each time she missed a milestone, the worries increased until finally an ENT doctor referred us to Genetics.
We knew a diagnosis wouldn’t change our love for our little girl, but we were anxious for answers. Finally the test results came back with a rare genetic condition called duplication of 2p. Basically, a piece of Skyler’s second chromosome repeated itself, giving her extra genetic information. Individuals with this condition have a high variability in their symptoms. Many struggle with speech and growth in addition to other developmental delays. With a diagnosis and evaluations showing that Skyler’s development were behind, we were able to start therapies with early intervention and Skyler began to hit milestones!
After watching her with other kids, I realized that Sky was extremely interested in her peers and learned quickly from them. We decided that even though I had the ability to stay home with her, and we couldn’t necessarily afford to send her to daycare, that she needed some interaction with other children and adults. We weren’t sure how to find a place where she wouldn’t get hurt by her peers or be set in a high chair away from the other kids, because of her need for more supervision. (Yes, this actually happened at a child care center.)
We were told about the Rise School from a friend who has a child with Down syndrome. After a tour, I knew that we needed to figure out a way for Skyler to go to this school and that it would make a huge difference in her development. Skyler wasn’t making many noises at age 2 and we weren’t sure when or if she ever would.
We were lucky enough to get a spot in August of 2018 and have been so incredibly impressed with the care and guidance Skyler receives each day. She has started to talk, and said her first word under the watch of her amazing teachers who caught it on video. I will never forget this moment and cry every time I watch the video. They provide support for Skyler’s feeding challenges and help me problem-solve to find ways to help Skyler achieve all sorts of new skills. Since starting at the Rise, Skyler has gained a new confidence in herself that is truly remarkable.
Raising a child with unique challenges is beautiful and hard. Places like the Rise School give families like us a safe and loving environment that stimulates our little ones in ways that maybe we can’t. As a first time mom, I struggle with many decisions concerning my little Sky, but I knew right away that I nailed this one. Thank you for your generosity and contributions to this wonderful school. Without them, my daughter may not have found her voice. ←Back to Support Rise