Imagine being told your child won’t make it to her first day of kindergarten….
Adalynn’s Tay-Sachs Journey
Money raised by this GoFundMe account will continue to go directly to the family to help ease the financial stress and allow them to focus on taking care of their baby girl, until such time both parents can work outside the home. Your financial support is greatly appreciated; all I ask is that you please keep Adalynn, Megan and Hunter in your thoughts and prayers as they continue this journey. Thank you!
Friday at Cooper’s Ridge in Boonville Megan and Hunter are going to get married!!! They were selected as the lucky couple to be blessed with a free wedding!!! Ashley from Delight Events came up with this crazy idea for the big, free wedding!
Here is their story as told/nominated by Megan’s sister Leah.
“My sister, Megan and her fiancé, Hunter have been engaged for roughly two years now and their story is one worth hearing… their daughter Adalynn was born March of 2022.
Adalynn was diagnosed with Tay-Sachs Disease. This disease is a very rare genetic disorder in which there is an absence of an enzyme that helps break down fatty substances. These fatty substances build up toxic levels in the brain and spinal cord and destroy the nerve cells. Symptoms usually start to show up around 3-6 months of age, and as the disease progresses, development slows, and muscles begin to weaken. Over time, this will lead to seizures, vision and hearing loss, muscle stiffness/paralysis and other major issues. There is currently no cure for Tay-Sachs Disease, which means the symptoms will progress, and her body will slowly shut down. We were told that Adalynn’s current life expectancy is 2-3 years. There is a new clinical trial in Boston, Massachusetts, in which Adalynn will participate… More testing is required to determine whether this treatment can entirely stop the progression of Tay-Sachs Disease. Still, it definitely would provide the possibility of extending Adalynn’s life and give our sweet baby girl more time with her family and loved ones, which is all we can ask.”
– Megan’s sister, Leah Henry
