Lurie Children's Blog Search Results

• Williams Syndrome: Symptoms, Diagnosis & Support

  By Sarah Jurgensmeyer, Joshua Baker, and Vera Shively, Lurie Children's Division of Genetics, Genomics and Metabolism Although around 1 in 7,500 people worldwide have Williams syndrome , many people have not heard of the condition. Even though people with Williams syndrome and their families work year-round to raise awareness, the month of May is...

• Epilepsy Surgery Reconnects Adriel & RJ with Fullest Potential

  In suburban Chicago, the Navarette and Walters families once shared something concerning in common: young boys who experienced frequent, unpredictable seizures that interrupted life as they knew it. For Adriel Navarette, the seizures began when he was just a newborn as a result of hemimegelencephaly, a rare neurological disorder in which one side...

• The Spinal Muscular Atrophy Clinical Trial that Changed Koen’s Life

  Koen’s parents, Noel and Keith, describe their son as a thrill-seeking nine-year-old with a contagious energy for life. He’s extremely intelligent, curious, athletic, explorative, and a loving brother and friend to many. These stellar qualities are just a few of the reasons their guiding principle for Koen has always been to focus on the “cans,”...

• COVID-19 Vaccine for Kids Under 5

  Haga clic aquí para ver esta información en español. With children 6 months to 4 years old now eligible for the COVID-19 vaccine, Lurie Children’s pediatrics and infectious diseases experts are answering common questions, concerns and misconceptions for impacted parents and caregivers with kids in this age group. Nina Alfieri, MD, MS and...

• New Oral Immunotherapy Offers ‘Peace of Mind’ for Adelina’s Severe Peanut Allergy

  Eight-year-old Adelina is one of approximately 8% of children in the U.S. affected by a food allergy – a significant health concern that can pose life-threatening scenarios for patients and families on top of financial burdens and day-to-day challenges. As a baby, Adelina’s parents noticed she’d develop a rash when there were peanuts present. The...

• New DIPG Clinical Trial Launches at Lurie Children’s

  Improved therapies for children facing cancer can only be discovered through pediatric research. Placing a premium on innovation, Lurie Children’s Center for Cancer and Blood Disorders is committed to speeding up the development of new treatments by leading and participating in early phase clinical trials. Recently neuro-oncologist Ashley...

• With a bone marrow donation from her little sister, Cali is cured of sickle cell disease

  When Kendra and Lord Cole welcomed their first child in 2017, they envisioned a bright future. Their elation quickly gave way to concern when a newborn screening revealed their daughter Cali had sickle cell disease , an inherited condition in which abnormally shaped red blood cells cannot carry enough oxygen to the body, causing intense pain,...

• Lurie Children’s leads $4 million study examining improved treatment for severe form of epilepsy

  Twenty-six years ago, Dr. Tracy Dixon-Salazar’s then two-year-old little girl went from being a healthy, typical toddler to having hundreds of seizures a day virtually overnight. Her daughter Savannah was eventually diagnosed with Lennox-Gastaut Syndrome (LGS), a serious and rare form of epilepsy that begins in infancy and early childhood. LGS...

• Genetics Sheds Light on Cancer Risk

  By Shelly Weiss McQuaid and Vera Shively A young girl was referred to Lurie Children's for surgery after her pediatrician felt a mass in her abdomen during a routine checkup. The mass and her left kidney were removed. Further study of the mass in the laboratory revealed it was a cystic nephroma, a rare, non-cancerous (benign), kidney tumor. ...

• Former Lurie Children’s urology patient now advancing urological medicine so ‘kids can be kids’

  By Becca Rabizadeh, MPH candidate, a research volunteer and patient advocate in Lurie Children’s Department of Adolescent Medicine Becca Rabizadeh underwent several surgeries as a child and adolescent at Lurie Children's to treat a rare urological condition called bladder exstrophy. Today, she is a volunteer researcher at Lurie Children's...

• All Eyes on Gene Therapy

  By Valerie Castelluccio and Vera Shively, Lurie Children's Division of Genetics, Birth Defects and Metabolism In the past few years, exciting new therapies and clinical trials for genetic eye (ocular) conditions have emerged all over the world. At Lurie Children’s, we help qualified patients to enroll in clinical trials, including gene therapy...

• Understanding Clinical Trials: Patients, Families & Researchers Team Up for New Treatments

  By Rachel Katz and Vera Shively, Lurie Children's Division of Genetics, Genomics and Metabolism What does it take to go from cutting-edge science in the laboratory to new treatments for patients? Clinical trials are the way this is done. There are many clinical trials ongoing at Lurie Children's, each one tailored to a specific healthcare need...

• Clinical Trials at Lurie Children’s Benefit from Advances in Gene Therapy

  By Vera Shively and the Genetic Counseling Team at Lurie Children’s Background: Cells, Genes and DNA Our bodies are made of trillions of cells. Cells are like tiny factories that make products the body needs to grow and stay healthy. The instructions for making these products are stored in our genes. Each gene is a very long string of DNA...

• Wireless Sensors Advance Care for NICU Babies

  After an emergency C-section, Taschana Taylor’s daughter Grace was rushed to the neonatal intensive care unit (NICU) at Lurie Children’s where she remained for three weeks. Desperate to bond with their new baby, Taylor and her husband felt exhausted when navigating the wires to provide Grace with the most basic care. “Trying to feed her, change...

• Gene Therapy and Fertility Preservation Give Sisters Hope for Future

  When Laura and Christopher Jones traveled to an orphanage in China, they didn’t expect to come back with two children. When they met Zinnia and Lainee, however, they knew that even though they were not sisters, their bond was just as close and they couldn’t be separated. They adopted both girls, who are two of their eight children – four of their...

• Jonah’s Story – Raising Awareness for Infantile Spasms

  Jed and Erica’s son Jonah sustained a serious brain injury at birth. When he was 3-months old, Jonah’s EEG , a test of electrical activity in the brain, showed abnormalities that put him at risk for seizures. “Our doctor explained that normal protocol is for a child to receive another EEG at 9- or 12-months old and simply watch for seizures in the...