“We learned about Children’s Village when Shealyn was one month old. She was diagnosed with Prader-Willi syndrome, a spectrum disorder involving many medical issues.
When we left the Neonatal Intensive Care Unit, all of the Children’s Village’s services were set in place for us. A dietitian helped with weight checks, nutrition, and calculated calories. A speech and feeding therapist helped with the feeding difficulties. We also had an occupational therapist to help with low muscle tone and reaching development milestones.
As things progressed we’ve had different challenges along the way. Shealyn developed scoliosis and had to be in a brace for a little over a year. When she turned 2, she started speech therapy and hippo therapy, which is horseback riding, to help strengthen her core muscles. We did this for a little over a year and her spine has straightened out. She is stronger and brace-free now.
I can’t imagine where we would be today without Children’s Village and its services. With a new diagnosis and the grieving process that goes with that, there is no way that we could’ve managed to get everything set up and to obtain all the care that was needed. Without their help, Shea may not be doing as well as she is right now. Our family coordinator took care of everything and helped set up all of the services and specialists we needed. We’re very fortunate to have a place like Children’s Village here in Yakima.
In our personal journey with PWS we have been very lucky; it is a spectrum and we have been on the higher functioning side so far. We constantly push Shealyn and treat her no different than any other child. Even with all these things going on with Shealyn, everything is really good right now and we are on cruise control, in our new way of normal. We do have lots of hope. Hope for a medication that will help with hunger. Hope that someday she can attend college if she would like to. Hope that someday she may be able to live independently and have a job.”