Just over a year ago, local mom Krystyn LaBate started a foundation after her son Giovanni was diagnosed with two rare neurological conditions just 8 days before his first birthday, and today she is working on a community project to bring an inclusive playground to Saratoga County. Read more from Krystyn about her story and how you can help make this project a reality. Krystyn: From the day Giovanni was born we knew that something wasn't quite right, however, our concerns kept getting dismissed as we were told our son just had an underdeveloped nervous system. My mommy gut told me otherwise and I started fighting for answers. To make a long story short, my son was diagnosed with Periventricular Heterotpoia and Porencephaly. Periventricular Heterotopia is where the grey matter in the brain doesn't properly disperse during early fetal development. This brain abnormality caused him to have an interuterine stroke later in the pregnancy, which resulted in a large cerebral spinal fluid-filled cyst to form in his brain, called a porencephalic cyst.
After receiving these diagnoses, I started looking for information and support, only to find very limited resources. Even his team of doctors at Children's in Boston said that very little resources existed because these weren't "mainstream" diagnoses. It wasn't until I received a message through my son's Facebook page, from a mom in Texas who had just found out during her 20 week ultrasound, that her unborn son had Porencephaly. Her high risk OB told her to immediately terminate as her baby would have no quality of life. I talked to her about Giovanni and how he was doing. I shared with her the time a doctor walked into his room after reviewing his MRI, and thought that he was in the wrong room because he expected to see a child in a wheelchair, breathing through a trach. We went back and forth for quite a while and she ended up going through with the pregnancy and gave birth to a beautiful baby boy. While he does have some slight developmental delays, he is a loving and happy child...just like my son. This is what inspired me to start the Cortical Malformation and Cephalic Disorder (CMCD) Foundation.
As part of our mission, we have committed ourselves to raising awareness for all children with disabilities, doing what we can to ensure that they have the same opportunities as their typically developing peers. Before having Giovanni, I was blind to the challenges that still existed for children with disabilities. I had always assumed that the same opportunities existed for those with disabilities because there were regulations that said that they had to. It wasn't until I started facing challenges with Giovanni that I realized that this wasn't true. Giovanni didn't have the opportunity to play alongside his typically developing peers because the accommodations that he needed to do so did not exist. Current regulations only require that playgrounds provide ground level access to 50% of the play elements. Only providing access to half of the playground does not establish a socially-inclusive environment. Also, these regulations do not take into consideration children with sensory deficits and other developmental disabilities. Not only do we need to ensure access, we must also ensure inclusion. Children with disabilities deserve more than the minimum standards when it comes to playground inclusion and accessibility. Currently, there is only one inclusive playground which is located in a city two counties away. Making this trip is difficult for most families of children with disabilities, resulting in social isolation.
The CMCD Foundation has partnered with the Town of Milton to bring an inclusive playground to Saratoga County. The 17,000 square foot playground (pictured in photo at top of page) will be the first of its kind in the area. Not only with it meet the minimum ADA standards, it will go above and beyond to ensure that this is truly a playground for children of all abilities. We have committed to raising $80,000 for the purchase of accessible playground equipment, in addition to the two main play structures being purchased by the Town of Milton, as well as fencing to ensure the safety of all children. You can check out the full details on our website here.
Thank you to Krystyn for sharing your story with us. To help the CMCD Foundation raise the funds to make the playground possible, check out the CMCD Facebook page here which has info on fundraisers like the Super Smash Tournament this weekend, or be part of this amazing project by purchasing a custom-engraved brick with your own personal message to be part of the walkway.