Fund’s Purpose

The Jonah Gomez Fund raises money for:

Jonah’s care – Medical expenses that include travel to specialists in Oakland, California

Education – National conferences about the disease and current treatments

Outreach – Community programs in cooperation with the American Red Cross and The National Bone Marrow Donor Program

How You Can Help

Hold a Garage Sale for Gomey

Donate to the fund

What are SD and PKD Disorders?

Sickle Hemoglobin D disease is an inherited disease of the red blood cell that results in painful episodes, damage to vital organs, risk of serious infection and early death. The disease affects the main protein inside the red blood cell called hemoglobin. The disease occurs when a person inherits abnormal hemoglobin genes from both parents.

Sickle Cell disease has several forms, the most common referred to as SS, where the child inherits two sickle cell genes, one from each parent. If a child inherits one sickle cell gene and another abnormal type of hemoglobin, C or D, they would have SC or SD disease. S Beta Thalassemia, another inherited anemia, affects children who inherit one sickle cell gene and a Thalassemia gene. The affects of sickle cell disease vary from person to person. Some may rarely seem ill while others are frequently hospitalized.

Hemoglobin, in the red blood cell, carries oxygen from the lungs out to the body. Normal red blood cells are round and flexible in shape allowing them to travel easily throughout the body. People with sickle cell disease have abnormal hemoglobin where the cell looses its round, flexible shape and becomes distorted and rigid. Under a microscope, these abnormal cells resemble the C-shaped farm tool called a sickle, thus Sickle-Cell Anemia.

These abnormal shaped cells become trapped in small blood vessels, the spleen, the liver and other organs, resulting in organ damage and anemia or shortage of red blood cells. Anemia can cause an affected child to become pale, experience shortness of breath, become tired easily and delay growth and physical development. Certain conditions, such as infection or enlargement of the spleen, may worsen the anemia and speed up red blood cell destruction or reduce its production.

Pyruvate Kinase Deficiency or PKD is an inherited genetic disorder which affects the survival of red blood cells. This disorder causes severe anemia as a result of the premature destruction of PK deficient red blood cells. The clinical signs of anemia are very pale mucous membranes, increased heart rate and pounding pulses, weakness and exercise intolerance. The liver and spleen may be enlarged, and after one year of age, the density of all bones, particularly long bones and skull, appear to increase.

Links

Sickle Cell Disease Assosiation of America
Oakland Children's SCC http://www.taylorsvillebiggive.blogspot.com/