Inspiring Patient Stories

Caring for Matthew: Managing a Very Rare Disease

April 03, 2025 – Matthew was diagnosed with Phelan-McDermid Syndrome (PMS), a rare genetic disorder that affects development, speech, and cognitive ability, and requires extensive medical care and round-the-clock support. Despite his challenges, Matthew radiates love and joy, and his family is advocating for increased awareness of PMS while seeking potential treatments for the condition.

Patient of the Month: Adam

March 31, 2025 – At three, Adam's family moved to Florida, where they started fresh with a new medical team for his stage four Chronic Kidney Disease (CKD). At Nicklaus Children’s Hospital, Adam received expert care from a multidisciplinary team of specialists from Nicklaus Children’s Division of Nephrology, Division of Endocrinology, and Division of Gastroenterology, all who helped him overcome various health issues and be where he is today.

Luigi's Journey Toward a Better Tomorrow

March 31, 2025 – Luigi's parents faced fear and uncertainty when their son was diagnosed with Lennox-Gastaut syndrome and severe seizures at six months old. Thanks to the compassionate care and innovative treatments at Nicklaus Children’s Hospital, Luigi has made remarkable progress, and his family has opened a PPEC facility to support other families navigating similar challenges.

Jamie's Heart Saved Thanks to a Free EKG Screening

March 25, 2025 – Jamie was found to have a heart condition thanks to a free EKG screening held at a City of Miami summer camp in 2024. Nicklaus Children’s and the City of Miami joined forces to extend the hospitals free EKG screenings program to children in City of Miami parks. Jamie’s heart was repaired in the hospital’s cardiac catheterization laboratory and his family can feel comforted in knowing his heart is healthy.

Lily Shines a Light on the Importance of Early Detection of Neuromotor Delays

March 12, 2025 – Lily, age 2 ½, is walking independently and making remarkable progress, thanks to rehabilitative intervention at Nicklaus Children’s Hospital and an early diagnosis of cerebral palsy.

Unique Collaboration Saves Boy with Pancreatic Tumor

March 05, 2025 – Harry’s world was turned upside down when a severe abdominal pain landed him in the emergency room.  His parents were stunned to learn he had a large mass covering nearly 80 percent of his pancreas. Thankfully, Harry’s family was connected to Nicklaus Children’s Hospital’s pediatric surgery team for emergency surgery.
 

Patient of the Month: Carmella

February 28, 2025 – After Carmella developed bruising and red blood dots on her skin, she was rushed to the emergency room at her local hospital in Palm Beach. Initial tests showed a low platelet count, prompting further testing. At Nicklaus Children’s Helen & Jacob Shaham Cancer & Blood Disorders Institute, Carmella was diagnosed with Severe Aplastic Anemia (AA) and required a bone marrow transplant – her little brother Angelo was a perfect match and became her donor.

Against the Odds: Jack's Fight for Life

February 04, 2025 –

Kimberly and her husband learned their unborn son, Jack, had a congenital heart defect (Transposition of the Great Arteries), and after being referred to Nicklaus Children's Hospital for specialized care, Jack underwent open-heart surgery within days of his birth, leaving his future uncertain.

A Remarkable Recovery for Rydon

January 07, 2025 –

Patients of the Month: Crane Twins

December 30, 2024 – Born prematurely, twin brothers Benjamin and Emilio have faced health challenges since birth. Parents Maria Paula and Francisco’s concerns intensified when one twin’s stomach became grossly distended. Within a year, both boys were diagnosed with Hirschsprung’s disease, a rare congenital condition with only 21 known cases in identical twins, that negatively impacts the colon. Thanks to the team at Nicklaus Children’s Hospital’s Colorectal Center, the twins underwent life-changing surgery.

Natalie's Journey with Scoliosis

December 17, 2024 – Natalie was diagnosed with early onset scoliosis at 19 months and underwent years of treatment, including casting, bracing, and three surgeries, under the care of Dr. Stephen G. George. At age 12, after her final surgery to correct her spine, she completed her 10-year treatment journey and is ready to move forward.

Child Gets Second Chance at Life Thanks to Lifesaving Cancer Treatment

November 05, 2024 – Joffre Emmanuel, born with Down syndrome and later diagnosed with acute lymphocytic leukemia, has defied the odds since birth. After unsuccessful treatment in Ecuador, he received lifesaving immunotherapy and CAR T-cell therapy at Nicklaus Children's Hospital, leading to significant improvements and is back to enjoying his childhood.

Beyond the Diagnosis: Juniper's Story

October 30, 2024 – At just four-years-old, Juniper has proven she can tackle anything, including a cancerous brain tumor.

Jamie's Heart Story

October 28, 2024 – Jamie was found to have a congenital heart condition thanks to a free EKG screening held at a City of Miami summer camp in 2024.

First Surgery in Griffin Surgical Tower: Keily's Story

October 04, 2024 – Keily became our first patient to undergo an operation, a cleft lip-and-palate surgery, in the Kenneth C. Griffin Surgical Tower.

Patient of the Month: Luciana

September 02, 2024 – Despite being born prematurely, Luciana has always been a fighter and was determined to succeed. 

Santi Beats the Odds: A Story of Perseverance

August 30, 2024 – Santi brings joy to everyone around him, despite his medical limitations. At only age 7, Santi has memorized the telephone numbers of all his favorite people, including some of his nurses at Nicklaus Children’s Hospital.

Olivia: A Brave Princess Celebrates Completing Cancer Treatment and Finds New Dreams for the Future

August 12, 2024 –

When Olivia and her parents arrived at Nicklaus Children’s Hospital for the first time in May 2023, they were shocked to receive the news that Olivia had a cancerous growth in her left femur bone.

Tamryn Gets to Walk Again after Deep Brain Stimulation Treatment at Nicklaus Children's

July 15, 2024 – After Tamryn was diagnosed with TOR1-A Torsion Dystonia Type 1, a rare movement disorder that causes involuntary muscle contractions and abnormal movements, he underwent surgery at Nicklaus Children’s Hospital’s to have a Deep Brain Stimulator (DBS) implanted.

Jasiah's Journey

July 01, 2024 – For Kimberly, the journey began 26 weeks into her pregnancy when she received life-changing news: her unborn son, Jasiah, had a cleft lip and palate. Just two weeks later, Kimberly developed severe preeclampsia and had to give birth immediately. Jasiah's story is one of hope, healing, and the power of perseverance.