The DSAP saved my daughters life and allowed us to not feel so alone. From epilepsy, to apnea, to delayed gastric emptying they advised me on who to speak with and how to help my daughter. Our early intervention team advised us Skylar looks to be having seizures (not acid reflux which is what her pcp stated the spasms were). At the ER the nurses and doctors dismissed Skylars "drops" as "low tone due to having down syndrome " and discharged us from the hospital in a few hours. I was crying as I called Denise York, the amazing angel nurse at the down syndrome center and within a half hour she got the neurology department to give us a bed for VEEG to evaluate Skylar. My life changed the next morning. She was diagnosed with Infantile Spasms, a form of epilepsy which causes head drops and developmental delays. A month later she was also diagnosed with focal seizures, a form of epilepsy that occurs while the person is asleep.
After all the medical things were handled We were able fellowship with the local down syndrome community. The DSAP organized wonderful events such as the zoo and idawild trips. This helped me not feel so isolated. It made me feel good to see other families going through the same journey.
During this time were were also the recipients of a scholarship to the National Down syndrome Convention from a family with in the DSAP community!!! This was amazing to experience!!!
Which brings me to my final point, the Coronavirus podcast by Dr. Vellody. I have been terrified by a respiratory illness that could potentially kill people. Dr. Vellody has an ongoing podcast about everything to do with down syndrome and currently the Coronavirus. It has helped me understand the risk my daughter faces if she goes back into society. Its confirmed and put alot of things into perspective for me and my husband. This podcast helps me process the pandemic right now.
Please help the DSAP and join my family on this virtual walk. They helped Skylar so much.