August will be life-changing for Krishna Gulwani.
The seven-year-old boy will undergo a bone marrow transplant surgery; his second attempt after the first went horribly wrong.
After the first surgery on December 6, the little boy contracted a urinary infection.
His condition deteriorated so badly that he needed one bottle of blood a day for two months, which would drain out every time he needed the bathroom.
It nearly killed him.
But the boy was resilient, and he recovered.
Now, it's time to do it all over again, but the doctors are more hopeful this time.
The child, who has been kept in quarantine since December, can get a second chance of life. But the second surgery costs Rs 78 lakh.
The family is short of Rs 6 lakh. Will You Help?
Krishna is like your average seven-year-old boy, the mischievous kind.
He finds it difficult to sit still, and constantly whispers to his sister, 10-year-old Kanisha. When he's done with that, he starts play fighting with her, his small fists landing soft punches on her.
Then, he starts making mewing sounds near the recorder, and laughs hysterically when he sees the reaction of those around him.
His mother tries to quieten him, but she can’t help break into a smile at his antics.
But Krishna is not your average seven-year-old boy.
He has Thalassemia Major, a severe genetic disorder that causes excessive destruction of red blood cells leading to a life-threatening form of anaemia.
It means he needs blood transfusion every 21 days. As he grows older, the time-frame will reduce.
Doctors in India seem to have lost hope, and have asked his parents to "keep him happy" and "give him what he wants."
But fate may have big plans for him.
***
Jitendra and Vaishali Gulwani first learnt of their son's condition when he was six months old.
"He was normal when he was born," his mother says. "When he was six months, he got a fever. The doctor asked us to get a CBC (Complete Blood Count) done. That's when we discovered his condition. He needed blood transfusion since then."
The family later learnt that all three, the parents and Kanisha, were Thalassemia Minor, a less serious form of the disorder that does not require blood transfusions.
"First, he needed blood every 41 days. Then, it became monthly. Now, its 21 days," his mother adds. "The time period is becoming less. Now, he requires one pouch of 200 ml. Then, we will need two, then three."
His father explains the procedure.
"First, the doctor takes a blood sample, does a cross matching and then the transfusions happen," he says.
At first, they went to Hinduja hospital in Mahim, central Mumbai, for the blood transfusions.
But Jitendra, who works at a chemist shop in Dadar, also in central Mumbai, and earns a monthly salary of Rs 15,000, found it too expensive. The bills would go up as high as Rs 10,000 to Rs 12,000.
So they went to the Mahatma Gandhi Seva Mandir hospital, an NGO of the Maharashtra government. The procedure was free here, and they would only be charged Rs 200 for the bed.
It did not work out in the long run, as the family lives in Chembur, north east Mumbai, and the hospital is in Bandra, north west Mumbai. School timings would also clash.
These days, they go to the Sarvoday hospital in neighbouring Ghatkopar.
But there are other complications.
"(Due to the blood transfusions) The Ferritin level in the blood is very high, which is very harmful for his life. It is 3,400 (the normal range is 7 to 140 nanograms per millilitre. The high Ferritin level is harmful for vital organs like liver, heart, brain, pancreas and lungs. Over time, this iron can build to toxic levels that can cause diabetes and damage or even destroy an organ)."
Krishna can't have too much of his favourite food: Spinach (yes, would you believe it!) because it is rich in iron.
"But he loves dosas and idlis," his mother says. "He doesn't like his vegetables much. He refused to have bhindi right from the beginning! He's never even tasted it."
Jitendra has always been looking to cure his son for good.
That's when fate stepped in.
***
Helping Jitendra in his endeavour is his employer Ajit Shah who mostly leads a retired life.
He has been involved in Krishna's case from the time it was diagnosed.
Shah has met doctors in Pune, Ahmedabad and Vellore, trying to get a bone marrow match for Krishna. He has also helped the Gulwanis financially, as they have already spent Rs 20 lakh on Krishna's treatment so far.
In fact, he says Jitendra -- a trusted employee -- can help himself to the shop's cash register on days when he really needs money.
By coincidence Shah's nephew met a gentleman at the Jupiter hospital in Thane, the township near Mumbai, who was also looking for a bone marrow match for his son.
They kept in touch.
Later, he informed the family that he got a match in Taiwan.
"He had met a doctor in Pune who had met Dr Tang-Her Jaing in Taiwan. That doctor asked him to meet Dr Jaing," he says.
Dr Jaing is a paediatrician in umbilical cord blood transplantation, and has been working at Chang Guing's Children Hospital for 25 years.
In 2003, he performed the first successful transplant of unrelated umbilical cord blood for a child with Thalassemia Major in Taiwan, and has been doing so since then.
The gentleman found a match for his son and got the transplant done in June 2016.
"It so happened that we contacted him last December and he told us about his son's transplant. He asked us to meet him," Shah says.
So the family packed their bags and went to Taiwan on May 23. They met Dr Jaing the next day, gave him a blood sample, and returned to India.
Krishna's ears prick up as we talk about the flight.
It was his first trip abroad.
What did he do on the flight?
"Maja aaya! (I had fun!)," he exclaims. "TV dekha, cartoons dekha. I love Doraemon and Chota Bheem. Wapas jana hai, in the window seat!"
***
Nothing, of course, is ever simple.
The family needs to raise Rs 80 lakh to fund the trip to Taiwan, the surgery and the six-month stay in isolation there.
They have collected Rs 52 lakh so far, and paid the first deposit of Rs 11 lakh. The stem cell and surgery costs Rs 57 lakh, but they will get a surgery scheduled only after the money has been paid in full.
Jitendra is now contemplating selling his chawl in Chembur to meet the expenses.
Mother and son will go to Taiwan for the treatment while Jitendra will stay back with his daughter.
Ajit Shah hopes to go to Taiwan as well, in order to raise more money.
"We will stay in the hospital for three months, and then stay in an apartment for three more months," he says.
When they return, Krishna will have to be kept in isolation for another six or seven months.
***
Krishna may be getting ready for the biggest battle of his life, but he remains cheerful.
He says proudly that he doesn't cry during the transfusions, even during those injections.
"First, he used to cry a lot. Now, he's become strong. He doesn't cry anymore," his mother says.
"The transfusion lasts the whole day. We have to go to the hospital by 8 am, and we return at 6 pm. The transfusion takes four hours," she adds.
These days, he plays games on the mobile to pass time.
"There's no problem in his daily life. But when the blood goes down, we can see the change in him. He's active now, but that becomes less. He stops eating, and becomes low. Then, we have to take an earlier appointment," she says.
"He would always get gold stars in kindergarten," Vaishali says proudly, explaining that gold stars were earned by the top scorers of the class. "In his first terminal examinations in Std 1, he got A and A plus grades."
If you would like to help Krishna, his bank details are: Krishna Jitendra Gulwani
State Bank of India
Branch No 4205
A/C no: 37061654007 (Savings account)
IFCS code: SBIN0004205
Krishna Jitendra Gulwani
SVC Co-Operative Bank Ltd (Savings account)
Dadar East (MICR: 400089073)
IFSC code: SVCB0000083
Phone numbers: Jitendra Gulwani: 9820145832
Ajit Shah: 9820775152
