At two months old, Olivia began experiencing seizures. That day, the family sought emergency medical attention from a neurologist at the Children’s Hospital of Chicago. The results of an MRI, eye exam, and other testing confirmed that Olivia had Aicardi Syndrome, a rare condition caused by a genetic mutation that limits physical and cognitive development. Girls with her diagnosis have an average life expectancy of eight years.
Despite the “shock and heartbreak” of learning that her daughter’s illness was not curable, Olivia’s mother has “always been impressed and thankful that the children's hospital diagnosed her rare syndrome in less than 24 hours. There was a relief in knowing what we were dealing with.”
Max is a spirited young man who loves to act, golf, play baseball, and pal around with his brother, Els. He was born with tetralogy of fallot (TOF), a congenital heart defect that causes oxygen-poor blood to flow out of the heart and into the rest of the body. To help combat this, Max has a pacemaker and an artificial pulmonary valve. In January of 2017, he endured a month-long hospital stay to fight off endocarditis, which is life threatening blood infection. Thanks to the great team at Children’s Hospital Los Angeles, Max leads a full and vibrant life!
When twins Kayla and Sydney were born, their newborn screening came back with some bad news. Sydney was diagnosed with sickle cell disease and Kayla — the elder sister by one hour and one minute — was found to carry the trait. Sickle cell disease is described as a group of disorders that cause red blood cells to become misshapen and break down. This in turn causes infections, pain and fatigue.
Katie is truly a living miracle. At two days old, Katie was diagnosed as brain dead, but she shocked the world when she awoke from her coma three days later.
“When I took her home from the hospital, I was left with the impression that her brain was hurt badly as a result of being without oxygen. She had showed no respiratory effort after being born and the machines kept her breathing,” recalls Katie’s mother, Edwina.
Els lived what seemed like a “normal life” for nine years. However, that all changed in June of 2015. He was diagnosed with advanced bone age disease and premature adrenarche. Both conditions are extremely rare and often misdiagnosed.
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From a very early age, Madison — lovingly referred to as Maddy — possessed a very strong character and brought lots of laughter and smiles not only to her household but to just about everyone she met. At the age of 3, she embarked on a life changing journey that was also beyond her years — a battle with cancer.
One day in May of 2015, an 8-year-old Scharnese was competing for her school’s track team. Her mother noticed that Scharnese was running slower and seemed more out of breath than usual. The family sought medical attention for what they thought was an asthma attack. Scharnese’s symptoms subsided temporarily, but she was back in the hospital just days later. This time a chest x-ray revealed she had an enlarged heart. Scharnese was admitted to Norton’s Children’s Hospital where she was diagnosed with dilated cardiomyopathy — a kind of congestive heart failure.
Scharnese’s mother remembers feeling lost and unable to understand how or why this was happening to her daughter. “It was scary and I felt helpless — ‘cause you don't know how things will turn out.”
Amazing is the one word that best describes three-year-old Baxter. As an infant, Baxter experienced a brain injury that caused his previously healthy brain tissue to soften and deteriorate. When he was discharged from the NICU, Baxter’s parents didn’t have a clear understanding of what their son’s condition was, and they felt removed from any sort of support system. About a year and a half later, Baxter started having seizures. He was then diagnosed with spastic quadriplegic cerebral palsy at Boston Children’s Hospital, and this diagnosis connected Baxter and his family to the services and community that they had been hoping to find.