Logan Kisamore (Baton Rouge, LA)

By Patricia Kisamore

This picture is brought to you by Stx-209. A little boy playing a video game with his friend, not to unusual right? It is if that little boy has Fragile X Syndrome and this was his very first birthday party, at 9 years old.

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Getting the diagnosis that your child has a disability is crushing. You hear words like mental impairment, cognitive delays, social withdrawals, and language delay and your world feels like its spinning out of control. You grieve and grieve and then realize you cant just sit there so you find a glimmer of hope in the form of an experimental drug. You grab it and hold on for dear life. You take your child out of school and drive round trip 675 miles both ways every 6 weeks for just a chance. You subject him to blood draws, psychological testing, and all kinds of discomfort and look him in the eyes and tell him the why: to give him a better life. Then, you hit the lottery and get it and you see progress, real progress. You get raving reports from school, kids stop you in the hallway to tell you about your son, you see him pretending to be Batman and Superman and The Rock. You hear him use more words and his grandparents hear PawPaw and Nana. And then you hear the company has run out of money, thats it, no more.

This little boy gets it! He has never willing taken medication but he knows this little white pill that he asks for, has opened up his world. My heartbreaks at the thought of having it end. This time I have to look into his eyes and say “I am sorry, no more pills” and hope and desperately pray that he doesn’t go back into that bubble. We were so close but now we need a hero, or two, to help us help these kids have the life they deserve. My son adores super heroes, and we need one now more than ever. Let me look him in the eyes this time and say “There really are superheroes out there”.