When we heard the request for help, we could not refuse. A gentleman with hemophilia in India, Mr. C, was diagnosed with prostate cancer and needed financial assistance. While his hospital, the Christian Medical College, Vellore, India, helps pay for most of the expenses, it does not cover all of them. And most people with India must sacrifice greatly to cover the extra expenses. Even without hemophilia, patients must ask relatives for financial help, sacrifice their life savings, or… go without medical treatment.
Our colleague and partner, Usha Parthasarathy, alerted us to this gentleman’s need.
Prostate cancer is a leading cancer among men, with approximately one in eight men diagnosed during their lifetime. Cancer is diagnosed when cells in the prostate gland grow abnormally and rapidly. It’s often slow-growing, and many cases are detected early due to screening, leading to high survival rates. Surgery for Mr. C should ensure a long life. His hemophilia is cared for well by his local chapter.
We wish Mr. C a wonderful recovery, and are pleased to share his photos (with his permission) and the lovely letter he sent.
Thanks to CMC Vellore for caring for him, and to Usha for always watching over our Indian patients.
Maximum Impact is an LA Kelley Communications program that provides free factor, and funding for surgery, school and living needs. No overhead, fundraising or admin fees. Just maximum impact.
We often count our blessings at the holiday time of year. Sometimes it takes a reminder to know how fortunate we are to live in the US, even during troubled times.
I traveled in India for one week this month, primarily to visit the Christian Medical College (CMC) Vellore, where they specialize in caring for people with hemophilia. World renowned, we trust them and offer our support for surgeries for the poor. To date we have provided surgery or prosthetics for about a dozen patients. One of these is Kuvarsing.
I learned from our wonderful colleague and friend Usha Parthasarathy that this 25-year-old with hemophilia B has an inhibitor, making his life in poverty doubly difficult. He lives in Ramapur village, Maharashtra. His family works “in the field,” and he has two brothers and a sister.
He was undiagnosed for years. One day he developed swollen knees and severe pain in one knee. Despite the pain, Kuvar took his school exams. The control the boys have over pain is astounding. After the exam, he attended a health camp where he was informed that blood had accumulated in his knee and surgery was required. He underwent surgery and doctors applied bandages to his knee for three months. After the bandages were removed, swelling persisted. Further complications led him to the health camp for another surgery, during which more bleeding occurred.
Doctors referred him to King Edward Medical (KEM) Hospital in Mumbai, where it was diagnosed that Kuvar suffers from hemophilia B. From 2019 to 2020, despite health setbacks, Kuvar enrolled in a Bachelor of Arts program and successfully completed the first and second semesters!
Unfortunately a pseudotumor—almost unheard of in the US—developed in his knee. He tested positive for an inhibitor. The medical team at KEM hospital did their best to save his limb, but the high infection rate of the pseudotumor eventually led to amputation. The national group Hemophilia Federation (India) provided factor. The medical team at KEM wanted to provide him with a prosthetic leg for which he needed monetary support. But Kuvar would need to pay for this himself. Due to Kuvar’s low economic background, the financial burden has placed him in a difficult situation.
When we heard about this, we acted. Kuvar now has a new leg… and a new life. A great way to start 2025!
I’m in India this week—amazing India—to meet a group of lovely and inspiring women. These are the ladies of Tamil Nadu, the southern-most Indian state, the tenth largest Indian state by area and the sixth largest by population. It’s famous for its Hindu temples; its capital is Chennai, formerly known as Madras. While I’m here for primarily a meeting with a particular hospital where I’ve been assisting with surgeries, my colleague and longtime friend Usha Parthasarathy suggested I come early to meet the ladies of Tamil Nadu.
The ladies just formed a women’s group and had not yet met. This was the weekend! At small resort on the Bay of Bengal, nineteen women connected with hemophilia journeyed to meet one another. Some were mothers of children; some married a person with hemophilia; one was a young lady who has hemophilia. All were anxious to meet.
The weekend started with a puja, a ritual ceremony honoring the gods and also kicking off the celebration of meeting. We gathered round a chalk-inscribed design and lit small oil lamps; Ambika, a pro-active mother, sang a prayer. It was very moving and beautiful! Then we sat in a circle and played a game: each person paired with another and asked each other questions to learn who they were. They later had to repeat all they learned about the other person.
Later, Ambika explained that the meeting was called “Sunflowers of Hope” because the sunflower doesn’t always need rain or sun. It can draw nourishment from the sunflower next to it. What a great analogy to this meeting of women! And it’s why we dressed in yellow.
The most poignant moment for me was when one mom approached Usha and Amika. I could see them talking softly to her and moments later bedecked her with pretty earrings. Indians love their jewelry! The mom started crying and they all hugged. But what caused this?
Usha told me how her teen son with hemophilia had died just two years ago. Recently she was with relatives, who criticized her for wearing gold earrings. She should be in mourning, not wearing jewelry! Well, this is where a women’s group can work wonders. Usha and Ambika brought out a gift they had for her—beautiful new earrings. They supported her decision to wear them.
The rest of the weekend was learning: about leadership, advocacy, hemophilia, gene therapy and more. There were more games and workshops. The women seemed like best friends by the end.
But of all the marvelous things that took place this weekend, nothing could compare to the earrings. Such profound loss, such a simple act of kindness… and a mother now has strength to face her judgmental relatives. All because she was found the power of women who band together, the ladies of Tamil Nadu.
“Every time you spend money, you’re casting a vote for the kind of world you want.”
Environmentalist Anna Lappe
Pritam of India
It’s voting season here in the US, and this quote above comes to mind, but not about our politicians or economy. My friend and colleague Usha, from India, from time to time alerts me to people in dire need of help. Not just charity, but a way to give that makes a long-term impact. Like buying a prosthetic for a person with hemophilia so they can regain their dignity and livelihood. I’m totally on board with that. Consider this call for help she shared:
“I’m Pritam Rudra Paul, from Agartala, Tripura, India. I’m 28 years old, and have severe hemophilia B.
I was diagnosed with hemophilia in my early childhood. But due to wrong treatment and unavailability of free factors, I was unable to continue my treatment. As a result of repeated bleeding in my joints, both my knees were damaged, and I was unable to walk. Somehow from home I continued my studies as I was unable to attend school.
“In 2007, I went through a very hard time. I visited Christian Medical Center (CMC) in Vellore, India for a severe bleed and the doctor advised an operation. I requested help from many organizations, societies, HFI and doctors from Vellore. Finally I was able to continue my treatment and had my operation in 2009. I was finally able to walk properly!
Post-operation
Pritam and his family
“Life went on. I completed my graduation from college, and joined in a private firm, earning my own money. This is important because I come from a poor family. My father owns a very small business, selling fast food in a thela (cart). My mother is a housewife, and I have also a sister who is also studying in college. Our income puts us below the poverty line.
“Then, on November 21, 2021 I was married! But the day before that occasion, I got a serious muscle bleed in my right leg. It was hurting tremendously. I had infused many shots of factors, but the situation was going worst day by day. I went back to Vellore on December 10, 2021. After a check up they told me to go for another operation as an infection was already spreading all over the leg. The medical team tried their best to save my leg, but unfortunately couldn’t save it. My life was at risk due to the infection. On December 24, 2021, my leg was removed.
“The worst part was the finances. Several times I had to go to Vellore. This required money for traveling, the operation cost, and medicine. it was near about $8,000 US, and we earn less than $3 a day. In total, my family and my wife’s savings have been spent. I had to borrow money from my friends and relatives to pay for my treatment. During this time, I lost my job too. I must now look for another.”
Pritam Rudra Paul is an impressive young man by all accounts. No self-pity, always including his family in his concerns, and I agreed to help. And now? He has a beautiful new leg and is walking again! Check out the photos and videos. This is the kind of voting I like best.
Pritam emailed me yesterday and said, “I’m very confident by walking with this. I hope I will return soon to my normal life again. Thank you for your support and blessing. We are always thankful to you and Usha.”
We flew in Thursday night (Nov. 14) to Bhubaneswar. I love Bhubaneswar. It’s small, colorful, intriguing, and poor. Paved roads give way to dirt roads; cars give way to bull-drawn carts. Sometimes it seems the poorer the place, the more intrigued and comfortable I am. If I dared to believe in reincarnation, as Hindus do, I’d say I must have come from the slums in an earlier life. I am at home in them, and am drawn to them.
The hotel is nice that we checked into last night. Clean, quiet. But no hot shower, again. Will I never have a hot shower in India? This time it’s because the water heater was “hidden” from view—my own fault. The food in the restaurant is also good. Indian food is just delicious!
Chittaranjan
Usha and I again pack up toys and factor to share, and Chittaranjan, the secretary for the Bhubaneswar chapter, picks us up at 8:30 am. We go to the medical college where Chitta is attending as a nursing student.
Chitta is an amazing young man. Only 24, but so unworldly mature. He has hemophilia, limited access to any factor, is going to college, doing well, and running a whole hemophilia chapter! He pulled together this entire event today. His demeanor is respectful, but he knows when to push to get an idea or suggestion across. I marvel at his diplomatic communication skills. This young man is a keeper.
Greeting from the Dean of the Medical College
The event was lovely. A large sign welcoming us personally was hung on the wall. A special plaque was given to us both thank us for our help. So many families had traveled from very far away, to see us. We got to meet them all, one by one, and ask some questions related to their lives.
For example, one, Jitendra, is 14 years old. He receives money from Save One Life and spends it on education and treatment. He lives 150 kilometers away. His father works on a farm, and must travel far away daily. The father had an intense countenance, a combination of fear and desperation.
Laurie with young beneficiary of Save One Life
When I asked him what one thing would make your life easier (expecting him to say free factor) he said emphatically and without hesitation: a vegetable selling business, to open a roadside vendorship, to be near his son. Awesome answer. He needs 50,000 rupees to start ($1,000). Through out chat we learned that a storm ruined his house and he now lives in a tent!! He only earns $100 a month. We stressed to our partners that they must inform us when disaster strikes our beneficiaries! We can help this man, and I promise him we will get this money for his business.
We took photos with each child, recorded their progress and needs. The dean of the medical college came in to meet us, and greet the children. After a few hours, a take-away lunch was served, and we set out to do some home visits. One obstacle to our work is language: communication is really confusing here. India has about 70 languages, so when we travel to different cities, we have to speak English, translated into Hindi, translated into the local language and then back again. So three people are needed to ask questions and translate! When 2-3 people are speaking simultaneously, explaining, talking over each other, questions and answers are easily misunderstood. We must be über careful when interviewing so correct information is taken. Some things are almost a given and are never misconstrued: most families earn about $10- $40 a month, nothing when you think of what they have to buy. And add hemophilia on top of this… life is a day to day struggle to survive.
This is one reason why education is paramount. When you meet a child in the States, you often ask, “How old are you?” In India, you must ask, “What class are you?” Education trumps anything else in their young lives. Education is a key to a future. This is one reason why we stress that Save One Life monies be considered for funding education costs.
Bikram wants to be a doctor
We head out eventually to visit Bikram, a young man who is sponsored by Save One Life but who needs a scholarship. He desperately wants to attend medical college and needs funding to study for one year, called “medical coaching,” so he can pass the exams to get in. Bikram lives in a clean, new building, but he and his parents live in one small room of this. There is nowhere to cook. There is no bathroom, just a public one down the hall and out a door. There’s one bed and you must use your imagination to sort out where do they all sleep? Bikram never smiles the entire time we visit. I compliment him on the colorful motivational charts I see on the wall. Set goals. Listen to directions. Believe in yourself.
I tell Bikram we will get him the $1,000 he needs for coaching. Somehow. Believe in us. The mother has tears in her eyes when we explain to her we will help. She offers us some simple food, in the customs of Indians when you come to their home. It is always startling humbling when you are in the homes of the poor, sometimes the poorest of the poor, and they exhibit more graciousness than just about anyone you know.
Street in Cuttack
On Friday morning, we head to Cuttack, a suburb of Bhubaneswar, about an hour away. It’s a very colorful ride, past temples, roadside vendors, and fruit stands. The streets are a mad scramble packed with cows, bicycles, motorbikes, autorickshaws, trucks and cars. The hospital is a public one, so it is exploding with people. Chitta, Usha and I have to shoulder by a crowd to get in to the hematology ward.
Deepak needs immediate surgery
Our goal was simply to say hello to the director of hematology. He has so many people waiting in line we feel guilty being ushered in. We chat a bit, snap some photos, and then head out to the wards. While at the wards, we come across a huge and shocking surprise. A 16 year old boy, Deepak Das, propped up in a sad bed, flanked by his worried parents. His right thigh is grotesquely swollen, causing his right foot to drop; the skin is stretched till it looks like it might explode. It’s a pseudotumor, Dr. Sudha explains, and he needs an amputation ASAP. This is a complicated case and we urge the staff to consider bringing him to an HTC. They have no factor to do the operation and the operation has been postponed but the boy is now critical. We pledge the factor and any money that can help. The mother starts to cry, and the father immediately sets to praying intensely. India’s culture does not include hugging in public, but this mother, so grateful leans into me and we hug.
Usha, our amazing liaison for Save One Life
Our last city is Pondicherry, in the south, a short drive from Chennai. We flew to Chennai for two days to attend the 25th anniversary celebration of the Chapter, where Usha is from. She is delighted to be home. But Sunday morning, back on the road with a two hour drive to Pondi. Pondicherry is a former French colony which still retains a French flair about it. It’s pretty and quite different than the rest of India. It has temples, museums and a botanical garden (you know this if you watched Life of Pi). It seems to me there are however more stray dogs here than anywhere else. India is ravaged by stray dogs much as the dogs themselves are ravaged by fleas, ticks and skin disease —ubiquitous, yellow mutts with the mandatory
curly tail, as though they were all sired at one time by a common set of parents. Half are lame; many are lactating. They are starved, wary and are everywhere. They set their eyes on me, Usha says, because they know I look different and they are hoping for better treatment from a foreigner. They do tend to approach me and follow me.
We meet with a large group of children at the clinic, and do a home visit in the evening. on Monday, my last day in India, we go to the beach with Dr. Nalini, who runs the clinic and the chapter. Usha and I stand at the Bay of Bengal, enjoying the fresh sea breeze and watching the European tourists. We take in an ashram, where people go to study yoga, and best of all, an ancient 15 century Hindu temple. We removed our shoes, and walk in gingerly, speaking in hushed tones. I witnesses how Hindus pray; their unusual gods, with elephant and monkey heads, blue faced, adorning the walls. I joined a line to enter a sacred room, where everyone was praying. An oil lamp was brought out by a half-naked Indian, and devotees waved their hands in the flame, then touched power to their heads.
A blessing from an elephant
Exiting, I was surprised by an enormous pewter-colored elephant, ornamentally painted and sporting an ankle bracelet, just outside the temple door. When you offer it a coin, it snatches it then touches your head in blessing. Not having any rupees, I think I gave it a New York City transit coin.
We were tired after the day; the weather was steamy and humid. We drove back to Chennai, straight to the airport, after saying our good byes to Nalini. We stopped at a roadside place that was good, and ate some Northern Indian food and masala tea, summing up our to-do list for the week. I was kind of happy to be back in my traveling clothes—black pants, white sleeveless hiking top—but sad to leave. On this my fourth trip, I am used to India now, comfortable. I never get sick, and love the food and people. I do get mentally drained trying to sort out the languages, cadences and interruptions, but am ridiculously pleased overall with how Save One Life programs are functioning and are actually making a concrete measurable difference in patients’ lives.
Back towards Chennai and the city was crazy bustling at night. Thousands of roadside vendors, shops, motorcycles, autorickshaws. It’s a sensory overload. I am in awe at the amount of humanity in one city. And yet the airport was all but empty, giving Usha and me the time and space to say a bittersweet good bye. We are great partners, and compatible traveling mates. I guess it all seems easy when you have one mission, one goal. Much to think about on a 24-hour ride back to my world.
We took photos with each child, recorded their progress and needs. The dean of the medical college came in to meet us, and greet the children. After a few hours, a take-away lunch was served, and we set out to do some home visits. One obstacle to our work is language: communication is really confusing here. India has about 70 languages, so when we travel to different cities, we have to speak English, translated into Hindi, translated into the local language and then back again. So three people are needed to ask questions and translate! When 2-3 people are speaking simultaneously, explaining, talking over each other, questions and answers are easily misunderstood. We must be über careful when interviewing so correct information is taken. Some things are almost a given and are never misconstrued: most families earn about $10- $40 a month, nothing when you think of what they have to buy. And add hemophilia on top of this… life is a day to day struggle to survive.
