The story of Greyson
Hi there! I’m Kim- Greyson’s mom. Greyson is a 2 year old amazing little boy who was diagnosed with Infantile Tay-Sachs disease March 26, 2021. Greyson was born 7 weeks premature but was a rockstar in the NICU. He hit every single milestone and seemed like a “normal” healthy child until around 9 months of age. He stopped doing some of the things he used to do- like helping me turn pages in his book when we would read together, and the funny raspberry noise kids make with their lips. He stopped rolling over and reaching for toys. We began the search for answers around 12 months when he was not crawling, walking, and stopped saying “Mama and Dada”. He was having a hard time eating and lost a lot of weight. We met with every specialty and were admitted to the hospital to try and figure out what was going on. All 3 of us had our genomes run and we found that my husband and I are carriers of Tay-Sachs and we passed our recessive genes to Greyson. Tay-Sachs is a rare genetic disorder that is cruelly progressive. It causes an enzyme in the brain to be missing- that enzyme breaks down brain cell waste- which causes that waste to build up and leads to cell death. There currently is no cure or treatment and it is always fatal. We are determined to share Greyson’s story and legacy with the world to help educate and share genetic testing to hopefully spare another family from going through this as well. Greyson is an amazing child who has always been so sweet, loving, and so funny. He loves music, lights, and swimming.