Emberly is 3 1/2 and about two months ago we noticed she was having trouble with walking, and was shaking the majority of the day. Her brother was diagnosed a week before with a rare Mitochondrial Disease called Leigh’s Syndrome with the Surf1 Gene. Knowing what her brother has, we took her into the hospital where they found on her brain scan consistency with the same disease, Leigh’s Syndrome like her younger brother.
Leigh’s Syndrome is a terminal progressive disease that there is no cure for. Emberly has trouble walking, but has gained some strength back from a lot of physical therapy every week. Leigh’s Syndrome affects their central nervous system, ultimately causing them to lose the majority of the skills they have gained over time. Emberly is a very active toddler. She loves to run around and play outside. This disease has taken a lot of her strengths that she had before, making it more difficult for her to do the things she loved.
Our family and friends are raising money for the nonprofit Help Hope Live in honor of Emberly Lindsey to fund uninsured medical expenses associated with Leigh’s Syndrome.
We chose to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share Emberly’s page on your social media platforms.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
