06/2021 - 07/2022
Our beautiful baby boy was born 6 weeks early and spent a little over 2 months in the NICU. He captured the heart of each and every one of his doctors, nurses, and therapists. Daniel had infantile spasms which started at about 11 weeks old and proved to be treatment resistant which caused Daniel to require continuous oxygen and a feeding tube. Even with all of his equipment we were thankfully able to have multiple fun experiences with him, take him on a vacation to the beach, and make many memories.
Daniel blessed us with his first smiles at 4 months old. Although we didn’t get to see many smiles from him, the ones that we did see lit up the room. We received the official diagnosis of Daniel’s SNAP25 gene mutation when he was about 6 months old. Due to the inability to manage or control his spasms, Daniel gradually became completely immobile and remained nonverbal. He absolutely loved listening to music, watching his bright lights, floating in the water, and cuddling. He loved the aquarium and watching the shark pools with the beautiful reflecting lights. We were blessed to celebrate Daniel’s first birthday, surrounded by his friends and family, floating in a pool.
Daniel was such a strong little boy and fought through some major illnesses and many different diagnoses. We were beyond blessed by our almost 13 months with him. His memory, spirit, and strength live on in every heart that he touched.