Sagota was born into a world filled with challenges. Doctors diagnosed her with Vater Syndrome, a combination of several birth defects that frequently occur together and affect multiple areas of the body. Sagota’s physical and genetic anomalies required more than 12 surgeries before she reached her sixth birthday! Continue reading
“When I think what a hero is, it comes down to being brave. Leia’s family is brave. Despite all the challenges and setbacks with her development, they’ve never given up. They have always kept going with what they’ve learnt. Leia is such an amazing little girl that has had to face many challenges at her young age. Her family has been there the entire path and it is truly admirable.”
– Merlyn Moreira, CDTC Early Steps Service Coordinator
From Worst Fears to Warm Hugs – Twins Become CDTC Heroes
Twins Jemi and Jemmy first visited CDTC’s Dentist, Dr. Alonso, for a routine cleaning when the clinic opened in 2014. They were just 3 years old at the time.
The boys gave new meaning to being scared of the dentist.
“The first few visits were really bad,” remembers Dr. Alonso. “They would not sit in the chair. They were extra scared.” Continue reading
Michael is a 13-year-old boy who lives with his mother, father and little sister. Mom and Dad could not wait for Michael to be born. When Michael arrived, his parents learned he had amniotic band syndrome.
For Michael, the bands that cut off his blood supply in utero caused his fingers and legs to entangle and lose blood flow. He was born with webbed fingers and toes. In addition a defect in his leg affects the blood supply to his leg. The imprints on his legs where the bands were entangled are still visible.
As the first-born child, his parents were naturally frightened as to what his condition would mean for his life. He had two surgeries as a toddler to separate his fingers and toes. He wore casts on his hands and feet for several months following each surgery. Therefore, most of his parent’s memories of him as a child include his casts.
The surgeries repaired his blood flow. However, his fingers are different lengths. His left hand also still has defects that can make simple everyday tasks more difficult.
It’s Not Always the Physical Challenges That Are Hardest
As Michael progressed through school, the other children in his class teased and made fun him. Some cruelly referred to him as “no hands Michael.” Mom’s heart broke over the ridicule he endured simply because of his appearance and other children’s’ fear of what they do not understand.
Now that he is older, Michael knows how to talk to his peers about his condition and deflect any negativity that comes his way. But he’s not bitter about what he has gone through. Instead, he uses his condition to empathize with other children with disabilities and goes out of his way to be nice to others.
Through the help of his Lift a Child to Health Care Coordinator at CDTC, he is working with a counselor. He now has the tools to process his feelings of grief and anger. He is a wonderful student and doing very well all around. His Mom describes him as smart and helpful. She knows that he has a very bright future ahead of him.
Michael’s Journey Prepared Them For The Next
Because of what the family has gone through with Michael, they were better prepared when his sister was born five years ago with a heart murmur. Nevertheless, they have had to learn a lot in regards to her treatment. She shares the same LCH Care Coordinator who helps the family to address her health needs. The family would be lost without their CDTC doctors and the guidance and support they receive from their Care Coordinator.
Michael and his family’s story is inspiring because they have come out of a disheartening situation with such positivity and regard for everyone they encounter.
Solana was born in Argentina in 2006 with a diagnosis of Neutropenia, which is an abnormally low concentration of neutrophils (a type of white blood cell) in the blood. As a result, Solana was at great risk of infection on a daily basis. This prevented her from any kind of “typical” childhood or routine interaction with other children.
The seriousness of Solana’s condition played out with her being hospitalized in excess of 50 times during her first four years of life. She underwent multiple transfusions of plasma and red and white blood cells as well as endured numerous surgeries on her ears, throat, gallbladder and intestines.
Finding Help in South Florida
Desperately seeking appropriate medication and healthcare that Argentina was simply unable to provide, Solana and her family came to the United States when she was six years old. Initially, the family lived at the Ronald McDonald House in Miami. Healthcare professionals endeavored to locate resources and treat Solana who continued to experience multiple infections requiring hospitalization.
After a year in Miami, the family relocated to the Ronald McDonald House on the grounds of Broward Health. It was at this time that Solana and her family came to Children’s Diagnostic & Treatment Center (CDTC) for both medical care and case management. This was to be the beginning of her incredible journey to better health.
CDTC physicians and social workers were challenged by both determining effective treatment for Solana’s medical condition and the lack of available resources for the family.
Her CDTC teamworked diligently to coordinate services. They made multiple referrals to specialists and linkages to various social service agencies for Solana and her family.
Solana underwent surgery at the Salah Foundation Children’s Hospital whereby a patch was placed on her tympanic membrane. The patch covered a rupture that had happened due to reoccurring ear infections. This immediately decreased infections allowing her hearing to improve.
As Solana improved, the social work staff at CDTC helped relocate the family from the Ronald McDonald House into an independent shelter. Buoyed by her upgraded health condition and positive outlook, the family gradually secured a more stable living situation into their own apartment. The family also purchased a vehicle to transport Solana to various medical appointments since public transportation can still put her at risk for infection.
Solana Starts a New Life
Solana’s story is truly about her level of endurance and perseverance throughout this entire medical ordeal. She’s now on an effective medication regimen. Despite frequent hospitalizations, surgeries, incapacitation and isolation, she’s now able to maintain honor roll status at school. While she is only entering the seventh grade, Solana has already expressed a desire to become a physician so she can help others who are facing struggles similar to hers.
She enjoys arts and crafts, music and has recently become involved in field hockey. Solana maintains a positive outlook and dreams of a bright future. The challenges that Solana has faced have shaped her into a very mature, loving, caring and friendly young lady with a noble heart.
Mom says “she is very special” and we all agree!