Your support could save Radhika from lifelong blood transfusions.

My name is Ashutosh Jha and I am raising funds for my 3 yrs old Baby Radhika Jha who is suffering from Thalassemia Major and is undergoing treatment at Soni Manipal Hospital, Jaipur. The treatment is costing us Rs. 25-30 Lakhs and we need funds to continue the treatment and save her life. 

She has a 10 month old brother Shivansh.  Currently both require blood  transfusion twice in a month. It not good option at all to do blood transfusion every 15 days for entire life. As the time passes BMT success rate goes down. This is start of their life, later they would require blood more frequently. As we will delay in  treatment, possible risk will be also increase day by day. So we want it  to be done early. So we have to do BMT for both baby as soon as possible. 

We didn’t found any 10/10 unrelated Bone Marrow Match, we tried our best but highest match we found with 8/10. No any doctor agreed to do BMT with that match. So we have only option to perform Haplo-identical BMT.

My current financial condition is not  allowing me to get that much fund immediately. You are requested to please help us in getting fund for the treatment. I also urge to share your Contact details with donation amount with me on my personal e-mail ID forevercoolashu@gmail.com, so once I will be overcome from current situation I would refund. Please help us raise the required amount by clicking on the donate button and/or sharing this fundraiser with family and friends.

We are grateful for your help! Thanks in advance.

The Complete Story of Baby Radhika - My Experience with Thalassemia 

 It's been almost 3 Yrs since we are fighting with the deadly disease. We were never know that there is some genetic condition like this, that makes a human to Vampire. 

 Till 3 month of age there was no symptom for it and we were so happy for lovely baby, suddenly we observe diarrhea that persisted for almost 2 month until we get to know about the actual disease, we got assistance with many clinics getting some temporary relief and then again same problem. Along-with that we noticed that she was feeding mother milk almost full night and she was hardly sleeping whole night, Too much Sweating this was another symptom we noticed. With all this she got some infection with cough and cold, then only we decided to take her to some hospital.


We took her to Nobel Hospital in Pune, there doctor prescribed some medicines for cough, cold and diarrhea and suggested her HB level looks bit low (5-6) lets check that as well and we may need to admit her to hospital. We just told that we are not prepared to admission lets blood and other reports to come then accordingly next day we will admit her if needed.
 We reached home with her and just after an hour we got a call from hospital that she has just 2.6 HB and admit her immediately to some hospital otherwise you will loose your baby. It was very shocking for us we just rushed to Hospital and we admitted her without delay. Their investigation explored some more symptoms like enlarged spleen, lever infection and enlarged heart size due to lack of red blood cells. There they kept her for 5 days with her Mother. Doctor suggested to stop Mother's milk as she was not able to digest that and start formula milk. Radhika was getting better with blood transfusions and other medicines but her Mother was getting sick, so I discussed with doctor and took discharge from hospital.

During treatment with HB electroforesis test of baby and parental screening doctors confirmed about its Thalassemia Major and that come to baby due to infected gene of Father and mother both, and we both are also having Thalassemia Minor. Doctor insisted for Bone Marrow testing to confirm but we didn't went for same after knowing complexity and risk involved in procedure.

After that we tried almost every possible option to get some cure for the condition but no success. In last 2.5 years, we visited to Dr. Sunil Bhat in Mazumdar Cancer Centre Bangalore, Command Hospital, Sahyadri hospital, Ruby hall, Universal Hospital, Yashoda Hemetology Clinic all in Pune, in Delhi AIIMS and Dharamshila Hospital, In Mumbai Dr. Mamta Mangalani, over email interacted with cmc vellore bmt HOD and some other. We tried Ayurvedic Treatment with Dr. Mundewari in Mumbra Mumbai, Homeopathic Treatment in Dr. Susumno Ghosh in Kolkata. On every single information we tried to contact doctor and tried to get some cure. But everywhere we had same outcome no cure only solution is either BMT or blood transfusion for entire life.

 During all this we were getting blood in Command Hospital and had in touch with Dr. Sanjeevan Sharma for further course of action. He suggested to have another baby if we get match transplant could be done easily without much complications. So accordingly we planned and with his suggestion went for Pre-natal Diagnosis in ~8 week to Genetic Counselor Dr. Chaitanya Datar in Sahyadri Genetic Lab Pune. He suggested we can do this diagnosis at week 13 or in week 16 with Amnio sample. Week 16 is having lesser complication and no harm to baby. So we opted for week 16 diagnosis, probably somewhere in mind not to kill the unborn baby in any case. 

 We didn't caused any unnecessary delay in procedure and gave sample on 1st day of week 16, and we waited for the result. Result came after 1 month till the time it was crossed 20 week timeline. That time we had mixed feeling one side I was happy that I got some reason for not to kill the unborn and same time our problems was about to get double as sample was also infected. On 2nd November 16 we had another mixed feelings as our family become complete and but we have to share pain of being parents of 2 Thalassemia patients. 


Now we had very limited option left to get cure of the disease, We met Dr. Vijay Ramnan in Yashoda Hemetology Clinic Pune. He gave long list of expensive medicines for Radhika and told even you want BMT but try these it will help to reduce iron level as transfusion rate will reduce. Medicines consist Thalidomide, EPO Trust, Wheat Grass Juice, Grapes Seed extract and some more, those alone cost ~20000 in a month. But when we started the medicine it was making Radhika's life more difficult with frequent drop in blood level, fatigue, abdominal pain, breathing problems, laziness, Vomiting, irritable. So after running medicines for almost 2 month we stopped with suggestion from our regular hematologist Dr. Sanjeevan Sharma.


 So another option failed, we tried to find unrelated match for Bone Marrow from different Marrow registry, we searched to most of the possible options but highest match we found with 8/10. No any doctor agreed to do BMT with that match, all suggested first get 10/10 match. Now we have only option to perform Haplo-identical BMT. We searched best hospital for same and we went to Dharamshila Hospital in Delhi, but the cost of treatment they estimated is making treatment out of our reach. 

During arranging fund for treatment we come to know about Dr. Satyendra Katewa, in Manipal Hospital, Jaipur. After talking to him, we decided to shift further treatment from Dharamshila Hospital to Manipal Hospital in Jaipur. Experience and facilities wise Manipal is having better arrangements. 
As per his suggestion we T-Cell Replete method rather than T-Cell Deplete in earlier treatment, that will help us to reduce cost of treatment to 25-30 Lakhs and make the treatment to our reach. For now we are just waiting to get funds to start her treatment.

 
All through tough time It was also more difficult for my soulmate Priti, who has been all the time supportive to me and adjusted with my frustration, anger and love without thinking about herself. I know this is never easy to manage 2 baby with Thalassemia Major, those require blood in every 15-20 days.

Our story I have shared feeling over-whiling support from many friends and strangers whom I don't know personally, many we never met, we never saw but we are just connected emotionally with bond of trust. 

On my appeal for seeking help I urged to share Contact details with donation amount with me on my personal e-mail ID forevercoolashu@gmail.com, so once I will be overcome from current situation I would refund, but it make me more sentimental by see not a single donor among more than 200, asked for refund. For now I would like to just thank all for all support they have given in the hour of need. I know the money received through different donations I can return back to society, to different needy ones, but it's gratitude, sympathy that is never repayable.

Till now we have received 7.13 Lakhs from 239 Donors. 

 I have faith in god and its god who is there to help with different mediators.

 ॐ सर्वे भवन्तु सुखिनः। सर्वे सन्तु निरामयाः ।
 सर्वे भद्राणि पश्यन्तु । मा कश्चिद्दुःखभाग्भवेत् ।
 ॐ शान्तिः शान्तिः शान्तिः ॥

Radhika's Story Published in local news paper
Radhika's Story Published in local news paper
Radhika's Story Published in local news paper
Radhika's Story Published in local news paper
Radhika's Story Published in local news paper
Radhika's Story Published in local news paper
Haplo Bone Marrow Transplant Process explanation and comparison
Haplo Bone Marrow Transplant Process explanation and comparison
Hospital Bill till Pre BMT stage
Hospital Bill till Pre BMT stage
Estimate Certificate
Estimate Certificate
Ask for an update
29th August 2017
Many of you would be concerned about Radhika's health. Till now her condition is as usual, on regular blood transfusions, tomorrow she will have another blood transfusion. Meanwhile, we are checking with Dr. Satyendra in Jaipur Manipal as suggested by one of my senior during arranging fund for baby, we are going there to meet doctor Monday 4th Sept. We have already spoken to Doctor over phone and after talking to him it looks like there we can save transplant cost by 5 to 10 lakhs. Let's see how it goes, I will update accordingly.

Till now we have received Rs. 5,64,600 from 200 different donors. With all huge support and blessings I hope we will able to reach to target figure. Thanks all for the trust and support shown in the hour of need.

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Rs.492,240
raised of Rs.2,500,000 goal

188 Supporters

29 Days to go

Payment options: Online, cheque pickups

Beneficiary: Radhika Jha info_outline

Supporters (188)

SG
Sameer donated Rs.1,000

Take care pal!!

RS
Rushi donated Rs.3,000

Get well soon and enjoy this world.

A
Anonymous donated Rs.200
A
Anonymous donated Rs.1,000

God bless her.

Nk
Nausheen donated Rs.300
A
Anonymous donated Rs.500