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Delivering a Miracle – Mercy’s Story

Mercy was diagnosed with a giant omphalocele and pulmonary hypertension, received exceptional care from the medical team at Nemours Children’s Hospital, made her parents feel comfortable and provided attention from every department that cared for them.

A Journey with 22q: Aiden’s Story

Shortly after his arrival into the world, Aiden was whisked away to the NICU. He was born with an array of complex health concerns, which led doctors to diagnose Aiden with 22q deletion syndrome (AKA DiGeorge syndrome or velocardiofacial syndrome). 22q deletion syndrome results from a small, missing part of chromosome 22. This deletion affects several body systems during development and can cause heart problems, kidney problems, a weak immune system, low calcium levels, hormone imbalances and speech problems, among other issues. Like up to 90% of children born with 22q deletion syndrome, Aiden struggled with nasal sounding speech. Because of this, it was hard for his parents to communicate with him and understand him, leading to frustration. After meeting with Dr. Kellogg and the rest of the 22q Team at Nemours, Aiden’s parents decided to pursue surgery to improve Aiden’s speech. When Aiden and his family arrived for his […]

Living With Morquio A – Zane’s Story

At 7 months old, Zane Brooks was diagnosed with Morquio A, a genetic condition that causes an enzyme deficiency with bone, heart, vision, and hearing problems. After his older brother (age 2.5 at the time) was diagnosed with Morquio A, Zane underwent genetic testing where he found out he did as well. “As soon as we heard that Morquio may be the diagnosis, we researched online and quickly came to the conclusion that Nemours was the best place for treatment,” said Zane’s mother Kimberlee. “Between blood work and official diagnosis, we watched many medical presentations on YouTube from Dr. Mary Theroux and Dr. Will Mackenzie and knew Nemours was the safest place for our boys.” The day of Zane’s diagnosis, the Brooks reached out to Dr. Theroux and Colleen Ditro. “Within 24 hours we had kind, knowledgeable emails in response,” said Kimberlee. “I remember talking with Colleen days after diagnosis as she walked […]

Nurses Week: The Gossman Family

In celebration of Nurses Week at Nemours Children’s Health, we are so excited to highlight one of our dynamic father-daughter duos, John and Sarah Gossman! John began his nursing career with us on the transport team at Nemours Children’s Hospital, Delaware. He fell in love with Nemours Children’s and knew that it was where he was meant to be. When his daughter, Sarah, became a nurse as well, John recommended she make the move to Nemours so she could grow with the organization. When they were both working as nurses at our hospital in Delaware, they would sometimes bump into each other! “While I was on the transport team,” says John, “On occasion I would either bring cardiac kids to 2B or the CICU where Sarah was working.  I would also pick-up Sarah’s cardiac kids that would be going home for the first time.” The pair have also been known […]

Heart of a Warrior – Troy’s Story

After Troy was born, he was struggling to breathe. His mother Holli alerted the labor and delivery nurses, and they responded by checking his pulse, noticing that it was abnormal. Holli’s life was turned upside down when she was told that Troy had to be transferred out of state from Cape May, NJ to Nemours Children’s Hospital in Wilmington, Delaware to get the care that he would need. He was born with an interrupted aortic arch, a rare congenital heart defect that happens when the aorta doesn’t form completely. At just 6 days old, and due to his small size, Troy had a procedure to place bands around his pulmonary arteries and a stent the ductus arteriosus, to control the excessive amount of blood going to his lungs and to provide circulation to the lower body, performed by pediatric cardiac surgeon, Dr. Christian Pizarro. Then, at 6 months old, Dr. […]

A Few Months of Hard, For a Lifetime of Walking

At 18 months old, my physical therapist noticed I was showing early signs of a condition that needed attention as soon as possible. When my physical therapist suggested my family schedule an appointment with an orthopedic team, my family came to Nemours Children’s Hospital, Delaware; I was diagnosed with diplegic cerebral palsy. I’m now 12 years old and love my care team at Nemours. Dr. Peter Gabos and Dr. Jason Howard mapped out a plan for muscle lengthening and surgical femur/tibia reconstruction. The road to recovery was both a mental and physical battle that I will never forget. Some days it’s a challenge getting around with leg braces and very tiring, but I’m determined. All the doctors and physical therapists are so nice and helpful. They push you to do more than you thought you could, and I wouldn’t be where I am today without them. I’m hoping that I […]

Olivia’s Story – Trisomy 18 Awareness Day

Brooke Renton’s life changed substantially when her daughter, Olivia, was born in March 2021, both in the physical sense (the family permanently relocated from Tallahassee to an Orlando suburb to be closer to Nemours Children’s Hospital, Florida) and in the emotional sense when she knew she would do anything for her sweet baby girl.   Born with a rare chromosomal condition called Trisomy 18 at a hospital in Tallahassee, Olivia had to be on a ventilator for the first 11 days of her life. The day before she was supposed to go home, doctors had to perform lifesaving CPR and place Olivia back on a ventilator. Olivia’s heart was “pouring blood into her lungs” due to a hole in her heart known as a ventricular septal defect. NICU doctors in Tallahassee told the family that Olivia would need a specialized center that performed advanced pediatric heart surgery to correct the issue. Due […]

Raymond’s Story (In Mom’s Words)

My name is Alex Gaudlap. Also known as Raymond’s mom. Our journey with Nemours Children’s Health started in the fall of 2017 when we relocated back to New Jersey from Camp Lejeune, North Carolina due to Raymond not hitting developmental milestones appropriately. The doctors down South assured me Raymond was fine, but my motherly instinct told me he wasn’t. From the moment we stepped foot into Nemours Children’s, I felt like our concerns were listened to. Raymond’s first appointment at Nemours was with a neurologist in the Deptford location. Since we were new patients and basically starting from the beginning with tests, she ordered a routine EEG. We never would have thought that his first test would give us answers, but it did. Raymond was diagnosed with a rare form of epilepsy; that gave us some indication to why he had a global developmental delay. After receiving the epilepsy diagnosis, […]

Rare Disease Day: Reynolds’s Story (In Dad’s Words)

On December 8, 2017, my wife Ashley delivered our twins, Reynolds, and Campbell. She gets all the credit. I didn’t do any of the heavy lifting. We always knew that Baby A was larger than Baby B, but we didn’t know why. And we had no idea that there were going to be complications at birth. The boys were born at 36 weeks via C-sections, immediately whisked away and taken to the NICU. Reynolds was eventually transferred to another NICU, while Campbell just needed a little more time to grow. So, Reynolds and I left Ashley and Campbell to go to a children’s hospital in Little Rock, Arkansas, where we ultimately spent 103 days in that NICU. He had airway issues. He had cardiac issues. He had GI issues. And throughout that entire time in the NICU, doctors knew that there was some underlying reason causing these issues, but no […]

Esperanza de un Guerrero – La Historia de Sebastian

En mayo de 2022, Sebastián llego triste de la escuela. Estaba yo preocupada por él. Pensé que tal vez alguien era un bully, pero me aseguró que estaba inusualmente cansado. Al día siguiente era lo mismo, y tenía fiebre, así que lo llevé al médico que le diagnosticó una infección de estómago y le recetó antibióticos. Mejoró, pero no pasó mucho tiempo antes de que regresaran los mismos síntomas. Fuimos a otro médico que dijo que era lo mismo y nos recetó aún más antibióticos. Me pregunté cómo podría ser una infección del estómago si no tenía síntomas gastrointestinales, pero seguí lo que dijo el médico. Pero luego se agregó la respiración rápida a sus síntomas y supe que algo más estaba pasando, así que esta vez lo llevé al hospital. La respiración era tan rápida que me asustó. Pensaron que era bronquiolitis y prescribieron un tratamiento con nebulizador. Cuando […]

Hope of a Warrior – Sebastian’s Story

To read this in Spanish, click here! One day in May of 2022, Sebastian came home sad after school, causing me to worry about his unusual behavior as he is a very happy child. I asked Sebastian if something was wrong and if he was being bullied at school. He assured me he was just unusually exhausted. The following day, Sebastian was in the same down mood, but had a fever this time. I took Sebastian quickly to our local doctor, where he was diagnosed with a stomach bug and prescribed antibiotics. He eventually felt better, but not much time passed before the same symptoms returned. We went to another doctor who gave him the same diagnosis and prescribed more antibiotics. I wondered how it could be a stomach bug if he had no GI symptoms, but I followed the doctor’s advice. Rapid breathing was later added to Sebastian’s symptoms, […]

Page 17 of 18

Page 17 of 18

Page 17 of 18