Guest Contributor, Author at Nemours Blog - Page 15 of 28

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PATIENT STORIES

An Extraordinary Journey with Down Syndrome: Arlo’s Story

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, […]

PATIENT STORIES

From Concussion to Clarity: Sammy’s Story

In 2020 and again in 2021, Sammy had two serious falls, both caused by fainting. Each time, Sammy was told she just had a concussion. However, the second time, her symptoms never went away. “I had a horrible headache that never left, the light continued to bother me and I wasn’t able to focus on stuff the way I normally did,” says Sammy. “I felt very limited during this time. I played volleyball and it would affect my ability to play. Being outside under the sun would cause me to get lightheaded and feel pain. I couldn’t touch my head much and I rarely pulled my hair up, unless it was for a game. It was even hard to sleep at night because of all the pressure I felt.” While in an appointment with Dr. Leto Barone for a different condition, he asked Sammy about her concussion. As she explained […]

PATIENT STORIES

A Life Worth Admiring: Aila’s Story

When Aila was just 2 years old, her parents started to notice that something was off. Each time Aila tried to walk, she was always holding onto something. She seemed to struggle when she wasn’t gripping her toy stroller. After going to see a local physical therapist, Aila’s family found out that she had SMA. SMA, or spinal muscular atrophy, is a genetic disorder that can affect your muscles, nerve cells, and spinal cord. People with SMA may experience a decline in strength and limited mobility. As Aila grew older, she had to use a wheelchair. She discovered that she could not complete tasks, like basic hygiene actions, on her own and frequently needed assistance. When she was about 7 years old, Aila began seeing doctors at Nemours Children’s Hospital, Florida. Her family was making 6-hour drives for Aila to be treated at Nemours Children’s. After countless hours of research […]

FEATURED POST

My Little Unicorn

Discover the touching story of baby Raegan, who overcame duodenal atresia with the heartwarming guidance of Nemours Advanced Delivery Program.

FEATURED POST

A Calling for Care: Timothy’s Associate Highlight

Critical Care Flight Nurse Timothy McCormick grew up in a family of medical professionals. In fact, his mother is a critical care nurse. His parents instilled in him the values of faith, community, education, and helping others. “I decided early on in my education to pursue a career in nursing and gravitated to critical care medicine,” says Timothy. “Its challenging environment and unique clinical cases provide the immense reward of aiding in the recovery of critically ill patients. I consider my profession as a registered nurse a calling.” Timothy began his nursing career in the Adult Critical Care setting. During this time, he worked both inpatient and in interfacility EMS as a Critical Care Transport RN. He cared for critically ill adults, obstetric patients, and pediatrics for the first 11 years of his career. Eventually, Timothy made his way to Nemours Children’s Hospital, Florida while seeking an opportunity to expand […]

FEATURED POST

A Foundation for Success: Jillian’s Story (In Her Own Words)

My name is Jillian Franko, and I am 26 years old. I was born with several physical complications including club feet, dislocations of the knees, hips and elbows, and severe cervical kyphosis. As parents, my mom and dad wanted to ensure that I received the best care. They scheduled an appointment for me with an orthopedic specialist, who recommended serial leg casting for my club feet. This procedure meant weekly visits to have my feet repositioned and cast. Not seeing any results from serial leg casting, my mom contacted a local children’s hospital. She made appointments with specialists in genetics, orthopedics, and neurology. Unfortunately, they were unable to determine a diagnosis, and thus, could not provide proper care or treatment plans. Unsatisfied with the outcome of these appointments, my mom contacted the Schuylkill County Society for Crippled Children. She spoke with the organization’s director, who informed her of their free […]

FEATURED POST

Overcoming Trevor Disease: Hudson’s Story

While Hudson’s parents were out of town, his grandmother noticed that something seemed a bit off with his ankle. She thought it looked funny, bigger. When his grandfather agreed, and also expressed concern about his ankle, they immediately booked a doctors’ appointment for Hudson when his parents returned home. “I took him in thinking, ‘I don’t know what’s going on,’” says Hudson’s mom, Elizabeth. “He hasn’t complained about anything, doesn’t have any pain, he thinks he’s fine. But, let’s go get his ankle checked, just to rule anything out.” That’s when they first met pediatric orthopedic surgeon Dr. Joseph Khoury at Nemours Children’s Health, Lakeland. After his first examination, Dr. Khoury explained to them that Hudson had flat feet. This didn’t come as a surprise to Elizabeth as her husband also has flat feet. “He then went on to do an X-ray,” says Elizabeth. “He looked at the results and Dr. […]

PATIENT STORIES

Finally Home and All Together: Brendan’s Story

When Courtney was pregnant with her son Brendan, her physician noticed something was off. During an ultrasound, they discovered that Brendan had an enlarged bowel, which can be a sign of cystic fibrosis. When Brendan was born in November of 2022, he was immediately placed in the NICU. “This was already planned and why we delivered in the Advanced Delivery Unit at Nemours Children’s Hospital,” explains Courtney. “The team was remarkable. Dr. Chou and our nurse, Mo, made a nerve-racking delivery as easy and seamless as possible. It was nothing but a great experience, considering the circumstances.” At only a day and a half old, Brendan had surgery. “During the surgery, they found that a part of the bowel had twisted on itself, causing it to not function properly,” says Courtney. “That day, they removed 30 cm of bowel and started the use of a colostomy bag. Then we had a 6-week healing […]

FEATURED POST

Beyond Diagnoses: Gaby’s Story

When Gaby was four years old, her family noticed that she was barely talking, was frequently losing her balance, and experiencing severe migraines. After going through many tests, including a sleep study, they found out that she had Chiari malformation. As Gaby continued to grow, her doctors uncovered more diagnoses including scoliosis, postural orthostatic tachycardia syndrome (POTS), Tethered Cord, Syringomyelia, secondary Hydrocephalus PTSD, among many others. Gaby was seeing a plethora of doctors and undergoing several different therapies, surgeries, and medications. However, her family was having difficulty finding doctors that specialized in Gaby’s conditions in Tampa. After doing some research, Gaby’s mom, Diana, found Nemours Children’s Hospital, Florida. Their first visit at Nemours Children’s was with the neurology team in Orlando when Gaby was about nine years old. “As a parent who has dealt with so many doctors, I have experienced doctors who don’t even know how to pronounce her […]

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Page 15 of 28

Page 15 of 28