Our sweet 5 year old, Greyson, was born a perfect 7 pounds and 10 ounces. We felt so blessed to have a healthy baby. That is, until 3 months of age, when he started to develop infantile spasms. Infantile spasms are a devastating type of seizure that can drastically harm brain function and are heart-wrenching to watch. After a myriad of diagnostic testing, including MRIs, EEGs, kidney ultrasound, vision exams, chest x-rays, and multiple blood draws, it was determined that he had Tuberous Sclerosis, a disease that we had never heard of before. He has multiple benign tumors on his brain, his kidneys, and his retinas. As well as light patches of skin all over his body. He is currently followed by 5 different doctors in 5 different specialties.
Greyson suffers with epilepsy, polycystic kidney disease, and hypertension on a daily basis. At some point in his life, he will have to have a kidney transplant. He is currently on 3 different medications a day.
In addition to his health issues, he is developmentally delayed. He is just beginning to speak at 5 years of age and he attends a special pre-K for children with special needs. There he receives physical therapy, occupational therapy, and speech therapy. In spite of all these hardships, Greyson is the sweetest child you will ever come across. He is a daily joy to us and he amazes us all with his strength of spirit. He is our hero. He is currently kicking epilepsy’s BUTT, by being 19 month seizure free!!
FEB
