Protected: Our Tourette Syndrome Journey: It’s So Much More Than Just Tics

Dani has spent the past five years navigating life with Poland Syndrome. Diagnosed at 14, Dani’s journey took her from feeling insecure about her body to embracing newfound confidence, all with the help of the compassionate team at Nemours Children’s Hospital, Delaware. Poland Syndrome is a condition characterized by the underdevelopment or absence of chest muscles. For Dani, it began to significantly affect her during puberty. “It really started to affect me when I realized that my left breast was not growing as my other one was,” shares Dani. This physical difference impacted her self-esteem, especially during the summer when finding a bathing suit seemed impossible. “It made me very insecure, and it was hard to find confidence within myself,” she shares. Simple activities like shopping for summer shirts or feeling comfortable at the beach became daunting challenges. Dani’s connection to Nemours Children’s began with her sister, who had been […]

Like many expectant parents, Arlo’s parents couldn’t wait to find out the sex of their baby. When Carlie was 12 weeks pregnant, they opted to get NIPT bloodwork done to find out as soon as possible. When their blood screening came back, Arlo’s parents were surprised to find out that their baby boy had a 98% chance of having Down Syndrome. “Of course, we were shocked,” says Carlie, “But knowing about our baby’s condition only helped solidify the fact that he was so wanted and so loved—extra chromosome and all.” “From the moment we got the phone call with our diagnosis, through the rest of my pregnancy and now, we have been beyond blessed with amazing doctors, nurses, and therapists,” says Carlie. “The Down Syndrome Clinic at Nemours has been a beautiful addition to Arlo’s village. We feel like they are truly there for us, not as just another patient, […]

Crew’s journey with Nemours Children’s Health began when he was just 9 months old. After being hospitalized for a seizure, his family met Dr. Sheth, a neurologist at Nemours Children’s Health, Jacksonville. “Dr. Sheth listened to everything I told him and watched videos I had captured of Crew’s seizures,” his mom recalled. “He instantly requested genetic testing, which gave us his diagnosis of Dravet syndrome.” Dr. Sheth’s quick thinking made all the difference. “It was so critical because there are many anti-seizure drugs that can worsen seizures in children with Dravet syndrome. Because it is a rare syndrome, many children get diagnosed later in life, but we are so very thankful that the Nemours Children’s team was able to give us an early diagnosis so we could treat it appropriately.” Before finding the right treatment, life for Crew’s family was filled with uncertainty and fear. “Crew was seizing almost weekly, and we […]