In December 2016 my dear friend Jenifer's first born daughter Anissa was diagnosed with LaFora Body Disease which is the most severe form of epilepsy. LaFora Disease is extremely rare and Anissa is 1/200 who have this disease worldwide. LaFora causes complete progressive cognitive decline along with physical decline. Anissa already shows symptoms of dementia and has difficulty walking. She will eventually be unable to perform daily activities including dressing herself, talking, and eating. LaFora is fatal and there is no cure or treatment at this time. Jenifer is not able to work outside the home because Anissa requires full time care. Anissa still continues to suffer from seizures as well. Her family works hard to keep Anissa safe and to have the best quality of life possible for her condition. Please visit
Chelseashope.org to learn more about LaFora.
As you can imagine, this situation is so incredibly heartbreaking for the family and all of us who love Anissa. Please join me in helping to send Anissa and her family on a summer adventure road trip starting in Arizona and ending in Oregon and then back home to Arizona. The family will be leaving at the end of June. Thank you from the bottom of my heart for helping this wonderful family spend time with Anissa while she is still able to travel.
- Shawn Barta
- Bobbi Tewes
- Bunko Group
Organizer and beneficiary
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