Jenece~You are not alone! We went for so long in the dark and thinking we were the only one experiencing this situation. We were so grateful to finally get a diagnosis and then to find the IDEA League (www.idea-league.org). It was such a relief to connect with other families and be able to talk to someone who finally understood what we went through. I encourage you to open up about your little one. I am here if you would like to chat. You can email me at haleyismyhero@gmail and we can connect. There are a few families in PA that I can also connect you wtih! Thanks so much for your kind thoughts. Your family will be in my prayers as well. HUGS!!! Lisa
Hello, my name is Jenece Bond from Pennsylvania and I am also a mother of a daughter with Dravet's Syndrome. My daughter's name is Taylen and she is three. I am just visiting your website and it's beautiful. It feels good to know that I'm not alone but I still hurt ( I know you understand). I admire your strength in sharing this with the world. I'm pretty private and deal with things within my family but viewing your site gives me the feeling of maybe opening up more about my baby. I thank you and my god continue to bless you and your family. -Jenece
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