Samantha Smith knew something was wrong when she saw the ultrasound. Connor, with 13 weeks left until birth, had a lemon-shaped head, a kidney with many cysts and tiny hands that never opened and closed.
Connor, now 7, was diagnosed with terminal trisomy 1p, a genetic disorder so rare it doesn't even have a layman's name. Connor cannot walk or talk and is completely dependent on his parents, Samantha and Kevin Smith.
Connor grew out of his specialized wheelchair and a new one, custom-molded to his body to help with the scoliosis, is on its way. Unfortunately, the wheelchair is too large for the family's mini-van, which cannot be retrofitted. So the family is fundraising for a new van. To make matters worse, the current van leaks oil, and has other problems caused by Tropical Storm Debby last summer.
With Kevin Smith's limited teaching income, purchasing a new van is not an option. The family exhausted every government agency they could think of, including Medicaid, Easter Seals and the Florida Developmental Disabilities Council, before realizing that there was no assistance for a modified vehicle.
"It was, at this point, after much discussion and prayer, the 'Go Fund Me' account was started," Samantha said.
GoFundMe.com is a crowd-funding website that lets individuals raise money for various causes. So far, the Smiths have raised $3,320 of the $35,000 they need for a modified van that will fit Connor's new wheelchair so that he can be safely transported to doctor visits and the hospital.
"Samantha and I talked about it and prayed over it," Kevin said. "I've been teaching for nine years and have had no raise for six years. We are not lazy or asking for people to give that don't have it. It was hard to do and humbling, but as a father, my son's needs come before pride. We couldn't afford it and his needs outweigh our pride."
The family is doing what they can to better their financial situation. Samantha is attending school part time to be a nurse and Kevin just finished a masters program to be an assistant principal. But they have two other children, Andrew, 2, and Theresa, 11, to care for. The family also lost their house and savings when Connor was born.
During Samantha's pregnancy with Connor, they put a down payment on a house. When they got his diagnosis, Samantha quit her job to spend every minute with him after his birth, since doctors said he probably wouldn't live for long. Connor lived despite the doctors' expectations, but the Smiths lost everything. They moved in with Samantha's mother and the two families lived side-by-side in a single family home.
Samantha said she was advised by her doctors to have an abortion because no child had ever survived trisomy 1p. She worries that people who see her fundraising efforts will fault the family's financial situation for ignoring the doctor's advice. Her strong Catholic faith and wish to prove the doctors wrong, however, meant terminating the pregnancy was never an option. Connor is now the oldest living person with trisomy 1p on medical record.
Just as Down syndrome is caused by having three copies of chromosome 21 instead of the usual two, Conner has an extra chromosome 1, which causes deformities and other complications.
He has a feeding tube and heart-rate and oxygen monitor, and struggles with epileptic seizures, curvature of the spine and lung disease. A night nurse has to sit with him while the family rests because sometimes he stops breathing and needs oxygen.
"We don't regret anything, and although it's a lot harder than we imagined it would be, Connor is such a blessing and he has enriched our lives," Samantha said. "Everyone who meets him and gets to know him absolutely adores him and although he has a lot of struggles, he is happy and we think he gets enjoyment out of life."
Connor's family works with a team of doctors at All Children's Hospital in St. Petersburg. Pediatric neurologist Steven Winesett helps keep Connor's seizures in check.
"Unfortunately, in kids with really complicated genetic disorders, it's hard to completely suppress the seizures," Winesett, an assistant professor of neurology at the USF College of Medicine, said. "We try to keep the seizures at a manageable level. The Smiths devote most of their time to Connor, but they keep their brave face on and do what they have to do. This is a family I really admire."
If you'd like to donate to Connor's handicap-accessible van fund, visit his "Go Fund Me" account at www.gofundme.com/1xue4s.