Resources for Children with Life-threatening Illnesses

Dreams Come True: Granting wishes to children between the ages of 2½ and 18 who’ve been diagnosed with a life-threatening illness. 

Camp Boggy Creek: Located in Eustis, FL, this year-round, free camp works in association with the Hole in the Wall Gang Camp, and is open to children between the ages of 7 and 16 diagnosed with cancer,  blood disorders, and other serious illnesses, and their families.

Our family-centered approach focuses on your whole child, not just the disease. Helping to guide you throughout your child’s diagnosis and treatment, our highly trained team includes an entire collection of health care providers and support service members:

• pediatric hematology doctors
• specially-trained pediatric hematology nurses
• licensed clinical social workers
• procedure scheduler, coordinates and obtains authorizations for specialty testing or imaging services outside of Nemours
• medical assistants
• Child Life specialists, who provide supportive and educational services, and activities using art and music therapy, to help promote positive coping strategies and understanding of the entire hospital experience
• registered dietitians

Other specialists who may be on your child’s care team include:

• radiologists
• psychiatrists and psychologists
• endocrinologists, who help treat problems relating to the endocrine system or glands
• neurologists and neurosurgeons, who treat problems with the brain and nervous system
• pulmonologists, who treat problems with the lungs
• gastroenterologists, who treat problems with the stomach
• ophthalmologists, who treat problems with the eyes
• infectious disease specialists
• orthopedic surgeons
• pediatric surgeons
• ENT specialists
• genetic specialists
• urologists

Blood disorders are diseases of the blood including:

• red blood cells, which carry oxygen to the body’s tissues
• white blood cells, which help your child’s body to fight infections
• platelets, which work to help your child’s blood clot properly
• clotting factors, proteins found in blood that help stop bleeding after a cut or surgery

Types of Red Blood Diseases We Treat

• Iron-deficiency anemia: low iron levels that lead to decreased hemoglobin, which helps carry oxygen through the blood to all parts of the body 
• G6PD deficiency (also called RBC enzyme abnormalities): an inherited condition in which a child lacks an enzyme that protects red blood cells
• Hemolytic anemias: the abnormal breakdown of red blood cells
• Sickle cell disease: a common inherited disorder caused when the red blood cells become sticky and oddly shaped
• Thalassemia (Cooley’s anemia): a genetic condition in which one of the two proteins that help make up hemoglobin in red blood cells is lacking
• Neutropenia: caused by a decreased amount of white blood cells that may be caused by disease or chemotherapy treatment
• Anemia: due to a chronic condition such as kidney disease, cancer, or lead poisoning    

Types of White Blood Cell Diseases We Treat

• Neutropenia: a condition caused by a decrease of white blood cells, as a result of disease or chemotherapy treatment
• Leukemia: a cancer of the blood that develops in the spongy center of some bones (called the bone marrow)
• Lymphoma: a blood cancer that develops in your child’s lymph system and includes two types: Hodgkin and non-Hodgkin lymphoma
• Myelodysplastic syndrome: blood cancer affecting the bone marrow

Types of Platelets Diseases We Treat

• Thrombocytopenia: a condition caused by too few platelets and results in abnormal bleeding
• Thrombocytosis: a condition caused by too many platelets, which can lead to clots in the blood vessels
• Idiopathic thrombocytopenic purpura: caused by a low number of platelets that results in abnormal bruising and bleeding
• Qualitative platelet disorders

At Nemours, our federally funded Hemophilia Treatment Center is a member of Region IV South, and only one of three in Florida.

This one-of-a-kind center provides comprehensive care and education to children diagnosed with a bleeding disorder and their families. Our team also participates in comprehensive care at all Nemours locations in Florida. Our goal is to keep children diagnosed with congenital (present at birth) bleeding disorders healthy and strong while minimizing complications.

Caring for Children With Hemophilia

Hemophilia is an inherited, uncontrolled bleeding disorder. Children diagnosed with hemophilia either lack or have a low supply of proteins in their blood called “factors:” factor VIII or factor IX. These factors help your child’s blood to clot after an injury, preventing excessive bleeding.

There are three main types of hemophilia:

• hemophilia A: the most common form, caused by a lack of blood clotting factor VIII
• hemophilia B: caused by a low supply of factor IX
• von Willebrand disease (vWF): this type of hemophilia causes prolonged bleeding  

Symptoms of hemophilia include:

• excessive bleeding
• bruising easily
• joint bleeds (causing chronic pain and immobility)
• bleeding into the muscles (causing swelling, pain, and redness)
• bleeding from injury or in the brain (brain hemorrhage)

Treatment for hemophilia depends on your child’s severity and may include:

• factor concentrates
• blood transfusions
• surgery
• limiting contact sports
• immunizations administered under the skin rather than in the muscle

• specialized blood testing and analysis in our state-of-the-art lab
• blood banking, a process that takes place in a lab at Wolfson Children’s Hospital to ensure donated blood is safe before it’s used for transfusions
• transfusions, a procedure in which your child is given whole blood or one part of it through an intravenous (IV) line
• bone marrow transplant, a procedure that replaces abnormal bone marrow or destroys cancer or abnormal cells, and then re-introduces healthy donor stem cells into your child’s body

We may know how to treat your child’s condition, but no one knows your child better than you. That’s why we want you to be an active participant in the decision-making process for your child’s treatment. We’ll explain every step in easily understandable terms, present all options (including alternative methods), and invite your input.

Whatever you’re facing, know that at Nemours we do whatever it takes to give your child the very best, most compassionate treatment possible. We treat every child as we would our own — your child, our promise.