Dear Supporters

Its been long time since our last update. I will try to give as short as possible because we had long year of hospitalization.

After may 2018 schooling for one year without any issues.

June 2019 - Typhoid fever
Salmonella sepsis(Typhoid fever) - Treated with high dose Antibiotic course

July 31 - Aug 02 2019 - No fever, only Node on neck -(Cervical biopsy)
left cervical Lymphadenopathy
Excision Biopsy sent for bacteriology and histopathalogy tests taken.
Result shows no sign of TB or lymphoma cancer.

One month schooling

Sep 05-15 2019 - (Pneumonia)
Cough and Fever
blood tests shows High CRP level
HRCT and xray  
Diagnosis: RSV(Respiratory syncytial virus) - Lower resperatory track infection
Treatment: (highflow support, high dose antibiotics, IVIG, antiviral)


Nov 11 - 13 2019 - (H1N1) fever
Antiviral treatment and supportive care


Nov 25 - 26 2019 - Fever
IVIG injection
IV Antibiotics continued more than 10 days

Dec 03 2019 Prolonged Fever
Bone marrow aspiration biopsy (culture,histopathalogy, GeneXpert and cytology)
low HB
Blood transfution(PRBC)
Diagnosis: Nothing found on any tests.

Dec 20 - 22 2019 Prolonged  Fever
splenohepatomegaly  pancytopenia
enlarged spleen and low blood count

Jan 11 - 2019 Prolonged fever
Low blood count
IVIG and Blood transfuion in day care.

Jan 14 - 17 2019 still has fever
Massive splenomegaly, Hypersplenism
3*3cm hypoecoic lesion on spleen
Still has fever( very low blood count)
PRBC - blood transfusion
Advised about Open Splenectomy
Given Needed vaccine before splenectomy


Jan 23-25 2020 - Open Splenectomy
17cm size of Spleen Removed
Within a day blood counts are back to normal level.

Few days after splenectomy:
Blood counts are normal, But Platelet count going very high.
The Splenectomy wound is healing.


We could not figure out the exact problem except the Spleen and Liver enlargement. So we had to remove the massive spleen before it gets ruptured.
One can live without spleen but if any bacterial infection catchups need to treat with antibiotics immediately for the rest of the life as there is no spleen to fight the bacteria
He is still on ATT and some Steroid support.
He is active now like a normal kid, but again a small neck node is showing up.


We met Dr Casanova at the worlds first MSMD conference(Life @War series4) which was held at Mumbai on Oct 14-15 2018.
He suggested some additional procedure before doing next BMT.

With the great support and care of our Dr Revathiraj and her team at Apollo, Chennai our fight is continuing..

Thank you

Dear Supporters,

Thank you for your overwhelming love and support. This couldn't have been possible without you.

We have been continuing ATT drugs almost three years, Venudev had frequent fever, cold and wheezing problems, our visit to the hospitals never stopped. In the meantime, doctor suggested us to have a PGD (Pre-implantation genetic diagnosis) to plan for another baby with proper HLA match for Venudev and also to rule out the chances of getting any genetic problem like Venudev has.

But the PGD is Expensive and its painful process, so later she suggested to have normal pregnancy as there are 75% chances to have normal baby without any problem and we can have CVS (Chronic villus sampling) which is a prenatal test that is used to detect birth defects, genetic diseases, and other problems during pregnancy.

Me, my wife and Venudev had a test before planning pregnancy at Mediscan-Chennai to confirm the existing problem to identify the same on the new baby.

Like we planned we had the CVS test at Mediscan-Chennai on Feb2018 at the 12th week of pregnancy, The test was like poking the stomach using a long needle till the  placenta to get some tissue like blood to get the DNA of the Fetus. The test process took 5 weeks which was like 5 months for us we were praying and waiting for the result to be normal.

The result came around 17th week of pregnancy.It was again a very tough time for us, The result was Positive for the same Immunodeficiency 27A.

We had no other choice than doing abortion, we consulted with our local gynecologist and admitted at the hospital early morning after taking couple of pills and lot of pain inducing injection throughout the day, I couldn't bear the pain which my wife was going through and it was like a normal delivery, but they had to cleanup the placenta on seduction. It was a fully grown fetus of a boy baby.

The next few days later Venudev had fever and rashes for almost twenty days, and a lymph node on armpit, And in 5 days of admission at Apollo they did Bone-marrow, Skin Biopsy, TB and other needed tests but all were negative, they were treating him with high dose of antibiotics, the rashes and fever came down without any findings
on all the reports except the spleen enlargement. We got discharged  and had the rest of the antibiotics injection for another week by making daily visit to the hospital. but the spleen size was abnormal.

After the discharge Dr RevathiRaj suggested to stop the ATT drugs as its been close to three years. After stopping the ATT drugs 15 days later  
Venudev had sever fever and enlarged spleen so again we admitted him at Apollo. this time he had more than 20 days of high fever.All the tests including PET CT and some blood cancer related test everything was negative. they added Picc Line in the right hand for long usage.
he was on antibiotics and IVIG but nothing helped and then they gave some steroids injection which stopped the fever.

5th may 2018 we got discharged. now he is on ATT, IM injection on odd days and some steroids tab, his spleen is better now but he don't have energy to do normal activities, maybe its because of the medicine he is on now.

We don't have a matching donor yet. we are not sure how long his body can tolerate all these medicines. In between my wife's only brother passed away a month back. Still we hoping that one day Venudev will be normal like any other kid.  Please keep praying for our baby.

Thank you.

Dear Supporter,

Venudev is doing fine and his hickman line is removed. We will be continuing the ATT drugs for three years. There might be NO BMT for three years as suggested by a senior doctor, who was contacted by Venudev's doctor in Apollo Hospitals.

His swollen under arm has burst and puss is coming out of it. The doctor has said that this will heal if the ATT drugs are taken properly, along with the additional injection that Venudev receives weekly thrice.

We have our frequent visits to the hospital. Routine blood tests for monitoring the side effects of the drugs are done.

After a year filled with struggle, our Venudev is turning 1on 20th May,2016.
We hope that he has all your blessings and wishes for his very first birthday.  
Venudev's doctor had reached out to a senior doctor, who had penned this letter to his (Venudev's) family :

Thanks for your note.
You ought to treat the mycob infection with at least 4 antibiotics and for at least 3 years. Maybe IV to begin with. Make sure the serum concentrations are OK. Choose the antibiotics based on the mycob isolate. You can measure serum IFNg to monitor the activity of the disease (the higher the worse).
Also you ought to treat any other infection (e.g. CMV, Salmonella) promptly and aggressively.
I do not recommend HSCT(Hematopoietic Stem Cell Transplantation) until there is clinical remission. Once you have clinical remission, we can resume the discussion about how to perform HSCT (with IFNg-blocking Abs).
Good luck !

Thank you.