Why am I fundraising?

It is with great difficulty that I and my wife are appealing to you to help us financially to raise money to get our only child treated. Our daughter has been diagnosed with Thalassemia Major – a genetic disorder with an abnormal formation of haemoglobin causing destruction of red-blood cells.

The treatment to this disorder is to perform a bone marrow transplant and the total cost of treatment is expected to go beyond INR 20,00,000 (Twenty lakh Indian Rupees) (or about USD 32,180).

I have been given about 6 months’ time to raise the money – any delay in treatment could be dangerous and too risky for my daughter.

I cannot afford it with my current income and with such less time available and we have already spent our savings on treatments done so far. Therefore I am hoping to raise a part of the amount through local associations, NGOs, government authorities, my family members, community centres, my friends, and colleagues.

Their response is heartening, however in order to get closer to the required amount, I humbly look forward for your support too.

Your generous offer – small or big – is certainly going to make us happy and help my daughter live a normal life.

What do I plan to do with the funds?

As mentioned above: The treatment to this disorder is to perform a bone marrow transplant on my daughter and the total cost of treatment is expected to go beyond INR 20,00,000 (Twenty lakh Indian Rupees) (or about USD 32,180). The funds collected will be used for the treatment.

You can find a detailed report below, treatment given so far and verification documents for authenticity. You are also welcome to verify the authenticity by getting in touch with the doctors as well as the concerned hospital. Contact numbers are below.

How can you donate?

If you wish to donate, you may do so via online transfer/DD/cheque directly to either the hospital bank account or my personal accounts given below:

Patient name: Omaira Aimen
MR No: 10020000581083

Narayana Hrudayalaya, Canara Bank
Narayana Hrudayalaya Extn.
Bommsandra Branch
Bangalore – 560099, Karnataka

Current A/C NO. 3021201010001
IFS/RTGS: CNRB0003021
Swift Code: CNRBINBBLSD
PAN: AABCN1685J

Please note: After the transfer, acknowledgement of transfer should be sent to below mentioned fax/mail.

Fax: +91 80 71222177
Mail: punith.yv@nhhospitals.org / vinodha.m@nhhospitals.org

Hospital contact person:
Sneha, Haematology OPD co-ordinator
Phone: +91 9902922116
Email: sneha.d@nhhospitals.org

 My contact details:

Khalifat Ur Rahman
+91 97395 31121 / +91 81474 06072
imrahman.k@gmail.com

Medical history and treatment details

Patient: Omaira Aimen
Medical condition: Thalassemia Major
Treatment: Bone Marrow Transplant
Hospital: Mazumdar Shah Medical Centre (Narayana Hrudayala Hospital), Bangalore
Physician: Dr Sharat Damodar MD,DNB,DM

Early symptoms and treatment timeline:

Dec 2012: It all started when our daughter developed a slight fever when she was just about 4 months old.

25-1-2013: As the fever did not subside following a regular treatment, the physician conducted complete blood check-up and found haemoglobin count at 6.7 (as against a normal 13.5). This was supervised by Dr Anuroop Shah, Shah Children’s Hospital, Gulbarga. See att-1

24-1-2013 to 26-1-2013: Following the very low haemoglobin count, Dr Anuroop conducted Electrophoresis and while awaiting its result - the first blood transfusion was conducted at his hospital. See att-2

31-01-2013: Test revealed that she is a Thalassemia Major and was immediately advised a monthly blood transfusion to maintain a standard haemoglobin count. See att-3

Since I work and reside in Bangalore and I'm only a native of Gulbarga, we brought her to Bangalore for advanced consultation.

18-2-2013: We consulted Dr Sharat Damodar of Narayana Hrudayala and was advised Electrophoresis of parents (i.e., me, and my wife (Zeenat Fathima). This is also called genetic counselling - conducted to identify if parents are carriers of Thalassemia Minor.

Test results indicated that we both (parents) are carriers of Thalassemia Minor - thus ascertaining the fact that our daughter being diagnosed as a Thalassemia Major. See att-4

Note: People with Thalassemia Minor lead a normal life (if both father and mother are Thalassemia Minors, then there is a 1 in 4 chance of their child being a Thalassemia Major). People with Thalassemia Major will need a one-time bone marrow transplant to live a normal life.

22-2-2013: Following the confirmation of the patient's medical condition, Dr Sharat Damodar advised monthly blood transfusion for the next 2 yrs.
See att-5

18-12-2014: Following close to 2 years of monthly blood transfusion, we consulted Dr Sharat and was advised HLA typing of patient & parents.

Note: As the patient doesn’t have any siblings, a HLA typing test is conducted to identify if any of the parents' bone marrow matches that of the patient - a successful match means that one of us can donate the bone marrow to our daughter.

As the test results showed that our bone marrow does not match our daughter 100% - we were told that a matching donor need to be found. See att-6

Note: In the United States and some European countries, there are many 'bone marrow banks' that keep a medical record of all donors who have been tested. (Similar to our blood banks)

9-1-2015: In order to search a matching donor, we need to send the patient's DNA sample report to several such hospitals/bone marrow banks. Therefore, we conducted a HLA typing (Buccal swab) on the patient and have sent the results to find the matching donor. See att-7

Future treatment: Once we find a matching donor, the donor bone marrow need to be transported to India and conduct the BMT (bone marrow transplantation) on the patient. Which requires an approximate amount of INR 20,00,000 (Twenty lakh Indian Rupees) (or about USD 32,180).

13-2-2015: While we are still awaiting a matching donor - monthly blood transfusion is being conducted at Indira Gandhi Institute of Child Health, Bangalore.