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  • 5 Years Old

  • Spina Bifida Myelomeningocele

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.  

“He loves showing off his wheelchair “tricks,” meeting new people, and learning their names.”

Joseph’s determination through each health challenge is growing into a resolution to be independent. His family and amazing team of therapists is doing everything they can to help him accomplish this. Unfortunately, even something as simple as a narrow doorway can thwart his efforts. That obstacle, along with a flight of stairs, means he must be carried to his bedroom. And this is just the beginning of how Joseph becomes like an infant all over again. He must be lifted to a changing station for diaper changes and all his grooming and bathing needs are fulfilled by mom and dad in a bathroom designed for those who can walk independently. 

Generous friends of the Smith family sent Joseph’s story to Sunshine on a Ranney Day and soon Joseph will have the independence and dignity he desires. The makeover of a downstairs bedroom and the transformation of a bathroom that is not accessible will provide him with the physical means to begin an independence that will stay with him his entire life. We are incredibly excited and grateful to everyone involved with this phenomenal gift.  

Just like Superman, underneath his sweet smile and friendly conversation, Joseph has strength and bravery that has kept this little guy soaring through everything life presents. Thank you to Sunshine on a Ranney Day for breaking down walls to help Joseph not just roll, but fly!

Photography by Vicki Alsup Photography