Strong, courageous and stylish all describe Hazel Sims. The pint sized beauty has always commanded attention when she walks into a room and has the heart of a champion. But there’s more to Hazel than her smile and heart – at five years old, she already has a story to tell.
Weighing two pounds at birth, doctors said there was only a small chance for her survival. But if you know Hazel – you know she is a fighter. During that time, her family was given shocking news; since her mother and father unknowingly had the Sickle Cell Trait, Hazel was born with Sickle Cell Disease. Complications from this inherited blood disorder can cause severe pain which last for days – and affects the heart, lungs, kidneys, liver, bones, and spleen – all of which Hazel has experienced. It is a pain like no other. It is constant. It is relenting. And it does not care if you are a child, a college student or a working adult. It is invisible and painful and often leaves behind emotional and financial strain.
Hazel has experienced this type of pain since she was one year old and for the past 5 years, she has endured bouts of excruciating pain, numerous blood transfusions, Morphine, antibiotics and emergency room visits. To regulate the sickle-shaped red blood cells that block blood vessels and cause pain, she takes a drug called Hydroxyurea every day and yet, she smiles!
Despite having to miss school often, she is doing well. She makes up all her missed work so she can stay on track with her peers. Hazel is ambitious, energetic, fun loving and eager to learn. She loves to run, climb, dance, sing and play with her friends. She enjoys entering pageants and does great in competitions (although she had to miss the last one due to a crisis). Hazel loves to go to events and assist her Grandmother, whom she calls “Momma” with photography events. At 6 years old, she already knows a lot about photography and even has her own SLR camera. She has met Misty Copeland, Lauren Anderson, Kim Roxie and other celebrities. She says she wants to be like “Momma” and take a photo with President Obama one day!
The only known cure for Sickle Cell is a Bone Marrow Transplant, so when her baby brother was born, there was hope that he would be the DNA match. To everyone’s dismay, he was not. Yet, Hazel smiled! Due to her mixed Creole ancestry, it is extremely difficult to find a match. Hazel volunteers with Be the Match Foundation to get people tested and put in the national registry. Her most recent pain crisis was on the day before Easter. She was in the emergency room due to debilitating pain, fever and a swollen toe which turned out to be fractured.
Hazel and her grandmother hope to bring awareness to a life threatening disease that does not get enough attention or funding. Last year, they held a small fashion show and called it The Faces of Sickle Cell and featured children with the disease or trait as models, with proceeds helping families with expenses such as food, parking and bills while their loved one is in the hospital. Her friend Kyssi was an honorary model. Kyssi visited Hazel once while they were being hospitalized. They looked at each other and began crying profusely for each other to get better. Hazel often asks, “Why did Kyssi have to die?” That is a question we all have; how many more children will die from blood related diseases?
Hazel is a Miracle Child who continues to beat the odds. Together, we can find her a cure so that she can live a long and productive life and continue to smile.