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18-year-old Chloe is preparing for her next chapter while continuing to manage a rare skeletal dysplasia with the support of her care team at Nemours Children’s Hospital, Delaware. Her medical journey began early, and has been shaped by expert care, community, and a team that understands her unique needs. During her mother, Cynthia’s, pregnancy, an ultrasound revealed that Chloe would be born with a form of dwarfism. These early signs prompted close monitoring and additional testing after birth. It wasn’t until she was about 1.5 years old that Chloe underwent genetic testing, confirming a spondyloepiphyseal dysplasia (SED) diagnosis. SEDs are disorders that involve both the spine and the ends of long bones. Patients with SED often experience musculoskeletal problems with the neck, spine, lower limbs, feet, and joints. As her family navigated the early stages of her diagnosis, they connected with Little People of America (LPA). While attending an LPA regional […]

Ticks might look like insects, but they’re not. They’re part of the arachnid family, which includes spiders. When a tick bites, it attaches itself to the skin and sucks blood. Most tick bites are harmless and don’t need medical treatment. But some ticks (like the deer tick) can carry harmful germs that cause illnesses like Lyme disease. How can I prevent tick bites and Lyme disease? While enjoying the outdoors, it’s important to remember that there are hundreds of kinds of ticks, and not all ticks carry Lyme disease. Here are some tips to help protect your family from the risk of a tick bite before heading out, and what to do after a day of exploring nature: Ticks removed within 36 hours are less likely to spread diseases. So, if you pluck the tick off right away, your child can’t be infected. Because ticks (especially deer ticks) are tiny, they may be hard to […]

Shanaya and her family live in Trinidad and Tobago. Around the time she turned 3, they began noticing a delay in her speech. While they pursued testing and therapy in their home country, the results weren’t clear, and they weren’t making progress. As Shanaya grew older, her family noticed she wasn’t engaging with others the way they expected. They found themselves going from appointment to appointment, but still without real answers or solutions. That’s when Rena, Shanaya’s mom, reached out to her sister in law who lives in Lake Nona, Florida. Her sister knew about Nemours Children’s Hospital, Florida and recommended exploring care options in Orlando. That advice – and introduction to the International Medicine Program at Nemours Children’s – set the family on a new path. Through a connection with Jordan Wadi, Nemours International Medicine Manager, the family began coordinating care with the Ear, Hearing and Communications Center. The […]