Timmy's Heart Foundation supports children and families living with sickle cell disease and other blood disorders. Through advocacy, education, hospital partnerships, and community outreach, we work to ensure no family faces this journey alone.
Timmy's Heart Foundation is a nonprofit dedicated to improving the lives of children and families affected by sickle cell disease and other blood disorders. We believe that every child — no matter what they face — deserves hope, support, and the chance to thrive.
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Hospital Partnerships
We work hand-in-hand with Nemours Children's Hospital to support young patients during treatment, donate toys, and brighten hospital stays.
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Family Support
Sickle cell disease affects the whole family. We provide resources, community connections, and emotional support to caregivers navigating this journey.
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Awareness & Advocacy
Through radio interviews, community events, and outreach, we raise awareness about sickle cell disease and advocate for better screening, research, and care.
Meet Timmy
A Warrior With Heart
Timmy was born with sickle cell disease. Despite genetic counseling, the trait was missed — and his family's world changed forever. But Timmy didn't let his diagnosis define him. From hospital beds to radio studios, he has become a voice for kids everywhere fighting blood diseases. Since he was a young boy, he's partnered with Nemours Children's Hospital, donating toys at Christmas, meeting with staff, and sharing his story to help other families.
Timmy representing the Foundation
Staying strong during treatment
Spreading awareness at Nemours
Finding joy in the journey
Family — the heart of everything
Our Partners
Working Together
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Nemours Children's Hospital
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Sickle Cell Disease Association
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Community Radio Partners
Join the Fight
Every donation, every shared story, every act of kindness paints a brighter future for children with sickle cell disease.
Understanding Sickle Cell Disease
Knowledge is power. Learn about the disease that affects over 100,000 Americans and millions worldwide — and how you can make a difference.
What is Sickle Cell Disease?
Sickle cell disease (SCD) is a group of inherited blood disorders that affect hemoglobin, the protein inside red blood cells that carries oxygen throughout the body. In healthy individuals, red blood cells are round, flexible, and move easily through blood vessels. In people with SCD, a genetic mutation causes some red blood cells to become rigid and shaped like a crescent or "sickle."
These misshapen cells are sticky and can clump together, blocking blood flow in small vessels. This leads to episodes of severe pain called "pain crises" (also called vaso-occlusive crises), and can cause damage to organs, tissues, and bones over time. The sickle cells also break down much faster than normal red blood cells, leading to chronic anemia.
SCD is caused by a mutation in the HBB gene, which provides instructions for making hemoglobin. To inherit the disease, a child must receive a copy of the sickle cell gene from both parents. If only one copy is inherited, the person has sickle cell trait (SCT) — they carry the gene but typically do not have symptoms.
Sickle Cell Trait vs. Sickle Cell Disease
Sickle Cell Trait (SCT): One copy of the sickle gene. Usually no symptoms. The person is a carrier and can pass the gene to their children. Approximately 1 in 13 Black or African American babies is born with sickle cell trait.
Sickle Cell Disease (SCD): Two copies of abnormal hemoglobin genes. Causes symptoms and serious complications. Both parents must carry the trait for a child to have SCD. There is a 25% chance with each pregnancy if both parents carry the trait.
Types of Sickle Cell Disease
There are several forms of SCD, depending on which genes are inherited. The severity varies by type.
Hemoglobin SS (HbSS)
The most common and most severe form, also known as sickle cell anemia. The person inherits two sickle cell genes (one from each parent). People with HbSS experience the most severe symptoms and frequent complications.
Hemoglobin SC (HbSC)
The second most common type. The person inherits one sickle cell gene and one gene for abnormal hemoglobin C. Generally milder than HbSS, but can still cause serious complications including vision problems.
Hemoglobin S Beta-Plus Thalassemia (HbSβ+)
One sickle gene plus one beta-thalassemia gene that reduces (but doesn't eliminate) normal hemoglobin production. Symptoms tend to be milder, though complications can still occur.
Hemoglobin S Beta-Zero Thalassemia (HbSβ0)
Similar to HbSS in severity. The beta-thalassemia gene completely prevents normal hemoglobin production, so the person makes only sickle hemoglobin. Symptoms and treatment are similar to sickle cell anemia.
Signs & Symptoms
Symptoms typically appear around 6 months of age and vary from person to person. Some people have mild symptoms while others are frequently hospitalized.
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Pain CrisesEpisodes of severe pain when sickle cells block blood flow. Can last hours to days and affect the chest, abdomen, joints, and bones.
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Chronic AnemiaSickle cells die in 10-20 days vs. 120 for normal cells. The body can't make new cells fast enough, causing persistent fatigue and weakness.
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Swelling (Dactylitis)Painful swelling of the hands and feet, often the first symptom noticed in babies and toddlers with SCD.
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Stroke RiskSickle cells can block major blood vessels supplying the brain. Children with SCD are at significantly higher risk of stroke.
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Acute Chest SyndromeA life-threatening complication similar to pneumonia. Causes chest pain, fever, and difficulty breathing. Requires emergency care.
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Vision ProblemsBlocked blood vessels in the eyes damage the retina. Can lead to vision impairment or blindness without monitoring.
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Bone & Joint DamageReduced blood supply causes avascular necrosis, especially in the hips. May require joint replacement in severe cases.
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Frequent InfectionsSCD often damages the spleen, weakening the immune system. Children are especially vulnerable to pneumonia and meningitis.
Treatment & Management
While there is no single universal cure, there are treatments that help people manage SCD and live fuller lives. Medical breakthroughs in recent years have brought new hope.
Medications
Hydroxyurea — An oral medication that reduces sickling of red blood cells. It can decrease pain crises, reduce hospitalizations, and prevent acute chest syndrome. FDA-approved for infants as young as 9 months.
L-Glutamine (Endari) — An amino acid supplement that reduces damage to red blood cells and decreases the frequency of pain crises.
Crizanlizumab (Adakveo) — A monthly IV infusion that helps prevent blood cells from sticking to vessel walls, reducing pain crises. Approved for patients 16 and older.
Blood Transfusions
Transfusions provide healthy red blood cells and help treat severe anemia, prevent stroke, and manage acute complications. Some patients receive regular transfusions as ongoing preventive care. Monitoring for iron overload is important with chronic transfusions.
Curative Therapies — New Hope
Bone Marrow / Stem Cell Transplant — Currently the most established cure. Healthy stem cells from a matched donor replace the patient's bone marrow. Most successful in children with a closely matched sibling donor. Carries significant risks.
Gene Therapy (FDA-approved 2023) — Two groundbreaking gene therapies were approved: Casgevy (which edits the patient's own genes using CRISPR technology) and Lyfgenia (which adds a corrected gene to stem cells). Both aim to enable the body to produce normal hemoglobin, offering the potential for a cure. Approved for patients 12 and older.
Day-to-Day Management
Stay hydrated — Dehydration triggers pain crises. Drink 8-10 glasses of water daily.
Avoid temperature extremes — Both very hot and very cold environments can trigger sickling.
Folic acid supplements — Supports red blood cell production.
Regular checkups — Including transcranial Doppler ultrasounds for children (ages 2-16) to monitor stroke risk, and eye exams for retinal complications.
Vaccinations & antibiotics — Children with SCD often take daily preventive antibiotics up to age 5 and need to stay current on all immunizations due to increased infection risk.
Who Does It Affect?
Sickle cell disease is the most common inherited blood disorder in the United States, affecting an estimated 100,000 Americans. Worldwide, millions more are affected. While it is most prevalent among people of African descent, SCD also occurs in people of Mediterranean, Middle Eastern, Indian, and Hispanic heritage.
The sickle cell gene originated in regions where malaria was common. Carrying one copy of the gene (sickle cell trait) actually provides a protective advantage against malaria — which is why the trait persists at high rates in populations from those regions.
Key Statistics
1 in 365 Black or African American babies is born with SCD.
1 in 13 Black or African American babies is born with sickle cell trait.
1 in 16,300 Hispanic American babies is born with SCD.
Average life expectancy for SCD patients has improved but is still estimated around 54 years without transplant — though new therapies may change this significantly.
Celebrities & Public Figures with Sickle Cell Disease
These individuals have used their platforms to raise awareness and inspire others living with SCD. Their stories show that sickle cell doesn't define your potential.
T-Boz (Tionne Watkins)
Grammy-Winning Singer, TLC
Diagnosed as a child and told she wouldn't live past 30. She has served as spokesperson for the Sickle Cell Disease Association of America and continues to advocate and thrive well beyond that prediction.
Prodigy (Albert Johnson)
Rapper, Mobb Deep
Diagnosed as an infant, the legendary MC spoke openly about living with sickle cell throughout his career. He endured frequent pain crises and used his music and platform to bring visibility to the disease.
Larenz Tate
Actor — Love Jones, Menace II Society
Has lived with sickle cell disease since childhood. He became a national spokesman for SCD awareness, emphasizing the importance of knowing your carrier status and encouraging genetic testing.
Tiki Barber
Former NFL Running Back, New York Giants
Played at the highest level of professional football despite his SCD diagnosis. His son also carries the trait, leading Tiki to create the III & Long Foundation to fight sickle cell disease.
Miles Davis
Legendary Jazz Musician
One of the most influential musicians of the 20th century, Davis was diagnosed with sickle cell anemia in 1961. He continued to revolutionize jazz despite dealing with pain crises and health challenges.
Adekunle Gold
Nigerian Singer-Songwriter
Grew up fighting sickle cell and the misconceptions that come with it. He referenced his experience with pain crises in his music, helping to bring visibility to SCD across a global audience.
Ramon Reed
Actor — The Lion King (Broadway), Disney Channel
Diagnosed at age 2-3, Reed has performed on Broadway and on screen while managing SCD. He's dealt with complications including sickle cell retinopathy, and calls himself a proud "sickle cell warrior."
Jordin Sparks
Singer, American Idol Winner — Advocate
Lost her stepsister Bryanna to sickle cell disease. Since then, she has become one of the most visible SCD advocates, working with the Sickle Cell Disease Association and the Generation S project to share patient stories.
How You Can Help
You don't need to be a doctor or a celebrity to make a difference. Here's how you can support the fight against sickle cell disease:
Get Tested
Know your sickle cell status. A simple blood test can determine if you carry the trait. If you and your partner both carry the trait, genetic counseling can help you understand the risks for your children.
Donate Blood
Many SCD patients rely on regular blood transfusions. Donating blood — especially if you are of African descent — can be life-saving, as closely matched blood reduces the risk of transfusion complications.
Support Organizations Like Timmy's Heart Foundation
Your donations fund hospital support, community outreach, toy drives for children in treatment, and educational programs. Every dollar helps a family feel less alone in their fight.
Join the Fight
Every donation, every shared story, every act of kindness paints a brighter future for children with sickle cell disease.
