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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 […]

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. […]

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 […]

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 […]

Overcoming Hip Dysplasia: Julieth’s Journey

Discover the inspiring story of Julieth, who was diagnosed with hip dysplasia at a young age. Learn about her treatment at Nemours Children’s Health and the impact it had on her life.

Energy Drinks & Kids: Know the Risks

Discover the risks associated with energy drinks for kids and learn about healthier alternatives. This article explores the ingredients in energy drinks, their potential dangers, and the importance of open communication with children. Help your kids make informed choices and adopt healthier habits.

Riley’s Scoliosis Journey

When Riley was born, she was diagnosed with a rare bone dysplasia that made her bones irregular in size and shape. As she grew, the dysplasia began to manifest itself in her spine, and she was diagnosed with congenital kyphoscoliosis at just one year old. For the next five years, Riley saw a specialist in Massachusetts and had to wear a brace for over 18 hours a day for six years. When Riley’s family moved to Pennsylvania for a new opportunity, they were referred to the amazing team at Nemours Children’s Hospital, Delaware. There, they met with Dr. William Mackenzie, who continued to provide Riley with the best care possible. As time went on, she had to undergo several casts, and implantation of magnetically controlled growing rods. This surgery, a complex procedure performed by both Dr Mackenzie and Dr. Suken Shah, pediatric orthopedic spinal surgeon, was successful to maintain the […]

Scoliosis Awareness Month: Smith’s Story

Scoliosis is a condition that affects the curvature of the spine and can be a challenging diagnosis for anyone to receive. For the Downing family, this diagnosis became a reality when their son, Smith, was only 15 months old. When Smith’s mother noticed asymmetry with Smith’s back, the Downing family sought out medical advice. After completing an MRI scan, the results confirmed that Smith had idiopathic infantile scoliosis with a 56-degree S-curve.   Smith’s scoliosis was also progressing. The Downings were concerned that if it were to continue at a high rate, Smith’s Smith’s scoliosis was also progressing. The Downing’s, who knew little about scoliosis at a toddler’s age, began to research as much as possible. They reached out to several doctors and hospitals but found little comfort in the limited options for correction. Most options presented to them by physicians included surgery with high complication rates, until they met Dr. […]

World MS Day: Kalianne’s Story

At the young age of 15, Kalianne never expected to receive the challenging diagnosis of multiple sclerosis. Overnight, her world changed. When Kalianne woke up sweating with chills and couldn’t feel the right side of her face or body, her dad immediately took her to the local ER. Kalianne was so nervous to be heading to the hospital, she got sick in the car on the way there. Once they arrived, Kalianne was whisked away for blood tests and a CT scan. After looking at her test results, the ER staff concluded that Kalianne was having severe headaches, which was causing the vomiting and other symptoms and then they sent her home. A few days had gone by, and Kalianne’s symptoms continued to worsen. She was experiencing numbness in her face and tongue, her limbs felt heavy, and she was losing the ability to write clearly. After researching her symptoms […]

Page 16 of 18

Page 16 of 18

Page 16 of 18