Help Legacy Get a Life-Saving Seizure Watch

Hello all, my name is Holly and I am the grandmother of Miss Legacy aka “Chuggie.” When she was about 6 months old, we realized that she was not hitting milestones and was having “tics.” Long story short, we (her mother and I) went to many doctors and were told she was fine, until around 18 months. Then all of a sudden, she was not okay. Her doctor told us she was having back-to-back seizures. After many more tests, we found out that she had a genetic mutation called ALG-13 that apparently only 17 people in the world have. She has every type of seizure there is and has been diagnosed with a rare and severe form of epilepsy called Lennox-Gastaut Syndrome. Legacy is also nonverbal and autistic. She has been on several medications since her first diagnosis, and some of them have helped more than others. At the last EEG, she was still having a lot of seizure activity. I pray that the new meds open new opportunities for her. She was approved for SSI, but it’s not really enough to get back and forth to all the doctors we are about to have to go see as we change states.

The reason for this fundraiser is to get her a watch to wear to monitor her seizures that will let us know when she is having bad seizure activity. We really don’t want to seem like we are begging, but the FDA has not approved it, so her insurance will not cover it. We just believe that if we had this watch, we could all rest better and be able to get her the help she needs immediately, considering she is unable to communicate her needs to us verbally. Any help that we get will be appreciated, and anything over the price of the watch will go to improving her life medically or educationally since she is now enrolled in a home-based school! We thank you for all your support, and even if you can’t donate, will you please share for our girl!!