Joseph has always been a little Superman. Even after receiving the prenatal diagnosis of spina bifida, we couldn’t have been prepared for the challenges we were about to face. Joseph was born prematurely with a large, open hole in his spine and bravely began his life with 77 days in the NICU. He underwent ten surgeries, countless medical scans and tests, revolving doctor appointments, and multiple hospital stays, which are the routine for so many special needs children. This can be scary for a young child, but Joseph is brave beyond his years.
Like many children with spina bifida, Joseph developed hydrocephalus, a condition that allows fluid to accumulate in the brain. This can cause brain damage from the buildup of pressure. Joseph had a shunt surgically placed in his skull as a newborn to protect his brain. The tiny tubing and valve keep the fluid that cushions the brain freely flowing. Despite the effects of hydrocephalus and an underdeveloped cerebellum, Joseph grew into a smart, funny little five-year-old boy.
For the first year and a half of his life, Joseph required 24-hour oxygen and a feeding tube for all his nutrition. By 18 months, he received his first tiny wheelchair as he is paralyzed from the waist down. He was non-verbal and used a voice-producing device until the was three and half years old. Then one day he recited the entire alphabet and hasn’t stopped talking since! Today, he only requires supplemental oxygen at night and eats by mouth on his own. He loves showing off his wheelchair “tricks,” meeting new people and learning their names. Although he has some developmental delays you will notice when you meet him, what outshines those is how earnestly he wants to be your friend. He has a strong memory for stories and loves to repeat (and repeat!) the adventures of historical heroes he has learned about.
