My child Kavya Srivarsha 5 years old is suffering from Beta THALASSEMIA MAJOR Disorder or COOLEYES ANEMIA .  She is under treatment in Christian Medical College, Vellore, Hospital No. 380379C. This disorder baby is known as newborn death. Thalassemia is the name of a group of genetic blood disorders. Till today I spent more than 6 lakhs rupees for temporary treatment. To understand how thalassemia affects the human body  or Kavya. 

Generally Bone marrow responsible for the production of blood cells. In blood, Hemoglobin is the oxygen-carrying component of the red blood cells. Hemoglobin has lots of iron granules attached to it. Hemoglobin consists of two different proteins, an alpha and a beta. If the body doesn’t produce enough of either of these two proteins, red blood cells do not form properly and can not carry sufficient oxygen to body organs. The result is Thalassemia, that begins in early childhood and last’s throughout life.

This is the most severe form of beta thalassemia in which the complete lack of beta protein in the hemoglobin causes a life-threatening anaemia that requires regular blood transfusions and extensive ongoing medical care.  These extensive, lifelong blood transfusions lead to iron-overload, which must be treated with chelation therapy to prevent early death from organ failure.

The most common treatment for all major forms of thalassemia is red blood cell transfusions, from blood. These transfusions are necessary to provide the baby with a temporary supply of healthy red blood cells with normal hemoglobin capable of carrying the oxygen that the baby's body needs.

Today my child Kavya Sri Varsha a Thalassemia major patient receives red blood cell transfusions every two to three weeks, because the bone marrow cannot make red blood cells. Due to regular blood transfusions iron levels increases in the body organs. The red blood cells are broken down slowly over the weeks, but the granules of iron that were attached to the bits of hemoglobin remain in the body. As there is no natural way for the body to eliminate iron, the iron in the transfused blood cells builds up into a condition known as "iron overload" and becomes toxic to tissues and organs, particularly the liver and heart. Extra iron makes problems such as weakness, muscle pain and spasm, darker skin, short and delayed puberty. Iron overload typically results in the patient's early death from organ failure.

To help remove excess iron, baby undergoes the difficult and painful Chelation therapy- infusion with drug Desferal (see encl-8). A needle is attached to a small battery-operated infusion pump and worn under the skin of the stomach or legs five to seven times a week for up to twelve hours. Desferal binds iron in a process called "chelation." Chelated iron is later eliminated, reducing amount of stored iron. Compliance with Desferal is vital to the thalassemia patient’s long-term survival. However, children find the treatment so difficult that they do not keep up with it or abandon the treatment altogether. Lack of compliance with chelation therapy accelerates health problems and may cause early death. To combat the compliance problem, Bone Marrow Transplantation, (BMT) is the final option. Both of us did not match the HLA for BMT. We continued blood transfusions for more than 52 times till date. It cost Rs.7000/- per month and painful days

(from whole blood to Red blood cells, Rs.1500; leucocytes blood filters, Rs.1200; Medicines Kelfer & Desferal etc., Rs1800; monthly hospitalisation Rs. 800 monthly ferrtin levels test Rs. 390/-).

The HLA of our one and half year old son, Yashendra Satyavardhan, had matched for BMT as identical donor. In the CMC, Vellore, Department of HAEMATOLOGY on 07-11-2006, request ID L06/0027, Hospital 380379C. They gave an estimated cost report of Rs. 10,00,000/- approximately; this cost can be higher in case of unforeseen complications. As my wife is a school teacher, as per G.o.74 of medical rules for reimbursement it should not exceed not more than Rs.1,70,000/- that the amount did not copy with the estimation given by the C.M.C., Vellore for my child’s BONE MARROW TRANSPLANTATION.

Please click on the following Enclosures:               

 1.  Estimation cost for bone Marrow Transplantation from the Hemotology Deoartment  CMC Vellore Hospital.India

2.  Income proof of my financial position : Income Certificate from Mandal Revenue Officer, Vijayawada. India

3.  Article in HINDU News Paper Vijayawada Edition, about Thalassemia covering Kavya Srivarsha dt. MAY 8th 2007

 kindly Contribute:

In INDIA

KAVYA SRI VARSHA.  

Account No. 30134682307.  

State bank of India 948, Vijayawada.

If you a NRI, wire banking to :

KAVYA SRI VARSHA.

Account No. 30134682307

SBI NEWYORK ROUTING  026009140      

CHIPS ABA CODE: 0914       

SWIFT: SBININBB325  

For any details please contact:

V.SARATHBABU,

75-14-187,

MASJID STREET, BHAVANI PURAM,

NEAR BHAVANI GHAT,

VIJAYAWADA  520012

e-mail: sarathbabu75@yahoo.com 

Father: +91 9393096779,

Mother: +91 9966476699.

Thanking You