Tobyn’s Triumph Festival raises awareness of spina bifida
Hudson Fields hosted the inaugural Tobyn’s Triumph Family Fun Day June 24, an event supporting and raising funds for those affected by spina bifida. The festival was held in honor of Tobyn Duffey, 2, a survivor of spina bifida, a rare disease that affects infants.
Tobyn is one of about 2,500 children diagnosed and born with spina bifida each year. Tobyn’s case is rare due to her post-procedure functionality being almost 100%, with the exception of having to be straight cathed and bearing a scar on her back from surgery.
Tobyn’s parents, Cassie and Sean Duffey, put together the festival to spread awareness about spina bifida and to show others there is hope for children diagnosed with the disease. The festival included vendors, food trucks and family-friendly activities such as bounce houses and face painting. All activities worked to raise funds for spina bifida.
Spina bifida is a type of neural tube defect along the spine most commonly found in infants before or after birth. Spina bifida can cause damage to the spinal cord and nerves, resulting in physical and intellectual disabilities.
At 20 weeks of pregnancy, Cassie was notified that Tobyn was diagnosed with spina bifida. Not knowing the significance of the diagnosis, Cassie and Sean searched for the best possible outcome for Tobyn.
Because the disease is so uncommon, little information is available for those with a child diagnosed with it. After receiving as many suggestions and information as possible, including termination and high-risk surgery, the Duffeys decided to do what they could to save Tobyn and have her undergo a surgical procedure.
To perform this surgery, doctors at the Children’s Hospital of Philadelphia had to extract Tobyn at 23 weeks, operate on the spinal cord, and place her back into her mother’s womb. Although terrifying, the surgery was successful, and Tobyn was born at 30 weeks weighing 3.6 pounds.
Tobyn’s spina bifida surgery and birth occurred during the height of COVID, a stressful time for everyone, especially those in the hospital. Post-birth, Tobyn stayed in the hospital for 42 days; Cassie stayed for 65 days; Sean took care of their six other children.
During this time, only one visitor was allowed in the hospital for one hour on one weekend day. Despite the stress of childbirth, COVID and feelings of loneliness, Cassie left the hospital in full health after more than two months.
After receiving surgery last summer for tethered cord, Tobyn is now able to walk and lives a relatively normal life. Tobyn’s diagnosis opened the Duffeys’ eyes to the lack of information available to those diagnosed with spina bifida, so they wanted to find ways to help families in similar situations.
“We’re doing all we can to help others not as fortunate as us. One of the toughest parts for us was, being in the hospital, we knew our prognosis for Tobyn looked great. In the same breath, you're in there and you become friends with other husbands and wives, and their prognosis isn't always the same. So you leave there with a heavy heart even though you're ecstatic for your own daughter,” Sean said.
Now nearly experts on spina bifida, the couple has become aware that 82% to 83% of mothers abort following a spina bifida diagnosis and only 1 in 2,500 children is actually born with the condition annually.
“It's my goal to educate Delaware on it because nobody knows what spina bifida is. Looking back, there are people that don't know any better than terminating their child when they could be perfectly healthy,” Cassie said.
After witnessing the success of Tobyn’s case of spina bifida, the couple has a newfound hope for other children and families suffering from the same disease.
“If they knew it was possible, how many children could be like Tobyn running around?” Sean said.
The festival was the first of many events the Duffey family will put together to raise awareness and donations. The festival had a great turnout of family, friends and members of the community who enjoyed live music, food and fun activities for kids.
The family also helps spread awareness by working directly with spina bifida families and doctors, sharing Tobyn’s story.
“We want to do care packages for the OB doctors and the [maternal fetal medicine] doctors with a booklet of other spina bifida cases and what's possible for their kid,” Cassie said.
The packages will provide options for families dealing with spina bifida so they can become knowledgeable on methods of action. The Duffeys have also partnered with the Philadelphia Spina Bifida Association, sending needed medical equipment. In return, the association puts new spina bifida families in touch with the Duffeys so they can provide help from first-hand experience.
Additionally, the Duffeys are planning to hold a 5K this October in honor of Spina Bifida Awareness Month. This will act as a way to get more members of the community involved with spina bifida awareness.
To find out more about Tobyn’s Triumph, ways to support, upcoming events, and ways to stay updated, go to tobynstriumph.com or visit the Tobyn’s Triumph Facebook page.
