Adalynn's Tay-Sachs Journey

I started a GoFundMe page for my granddaughter, Miss Adalynn Grace back in January, 2023. Adalynn was diagnosed with Infantile Tay-Sachs Disease in June, 2023 at the age of 4 months old. 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.

Adalynn was accepted into a Clinical Trial in Boston, Massachusetts, for Infantile Tay-Sachs disease in January, 2023, at which time her and her parents moved to Massachusetts for 3 months, while she received treatment. To do this, Adalynn's parents had to take a leave of absence from their jobs. Adalynn's treatment during the Clinical Trial involved travel between Worcester, MA and Boston, MA for extensive testing, suppression of her immune system, and injections of the clinical trial drug into both her brain and cerebral spinal fluid. Adalynn and her parents returned home at the end of May, however, due to her suppressed immune system, she was not able to return to daycare and is to limit public exposure, which also meant her mother was not able to return to work in order to care for her. In June 2023, Adalynn had an extreme allergic reaction to soy, which is believed to be due to FPIES, until further testing can be conducted by a digestive specialist. In July 2023, Adalynn experienced her first seizure, which lasted approximately 20 minutes and was life-flighted from Hannibal Regional Hospital to MU Children's Hospital in Columbia, MO. After an overnight stay in the hospital and undergoing a 24-hour EEG, it was determined that she will now take seizure medication twice daily, to hopefully control her seizures. Adalynn and her parents are scheduled to fly back to Boston / Worcester, Massachusetts in September for her 6-month follow-up. It is still unknown if/when she will be able to return to daycare and if/when her mother can return to work, or if she will require full-time specialty care. We are hoping that the Clinical Trial was effective and will possibly extend Adalynn’s life and give our sweet baby girl more time with her family and loved ones, which is all we can ask. The doctors running the Clinical Trial will follow Adalynn for the next five years to track her disease progression. 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!