The true-life story of the youngest patient in a long-term leprosy hospital who loves to serve and help other leprosy affected patients while he is also getting treatment. #helpingwhilehealing #healingwhilehelping
Rubbing sleep from his eyes, Fran then reached up to feel if the rough spot on his face had gone down during the night. It hadn’t. Was it possible that the skin was even a little more raised? Eyes completely open now, Fran jumped up and sidled into the kitchen where his mother was already awake and beginning preparations for breakfast. Fran rubbed the lid of the small pot his mother sometimes used until he could see his reflection. Leaning in, he checked his reflection in the lid. The red spot on his face did not appear to be going away.
His mother saw him and observed, “it’s the same, my son—except it’s growing bigger.” She weighed her next words carefully. “Maybe we should go to the hospital and get it checked.” Fran’s eyes widened. Hospital? For a small spot on his face? He felt uneasy about his mother’s words—he felt there was something his mother was not telling him. An unspoken word hung in the air. Leprosy. Surely his mother did not think this spot could be the dreaded leprosy?
Fran shook his head back and forth vigorously; an emphatic NO! But his mother was now eying him even more closely. “This afternoon,” she said. “We will get it checked this afternoon.”
Poor people in Bihar, India don’t normally go to doctors. The truth is, almost none of them have a family doctor. If they have a medical need that they can’t cure at home, they go to the hospital. A trip to the hospital can consume hours, often nearly half a day or more. That was the case this time. After what seemed an interminable wait, Fran’s turn finally came.
The doctor initially seemed gruff and exhausted. Nearly every day he felt overwhelmed with the endless lines of people needing his attention. His manner could be short and curt. But as he looked at the patch of raised skin on Fran’s face, he felt a cold dread run through him. This certainly looked like it could be a spot of leprosy. The doctor sent a biopsy for the lab to analyze.
The next time the doctor met with Fran and his mother, his demeanor seemed to have changed. Knowing how the entire family would be affected, he almost gently delivered the dreaded results. Fran had leprosy. For many in India, this dreaded word was not only felt like a death sentence, it carried the weight of a devastating social stigma—one that could affect the standing of the entire family.
Unfortunately, the small clinic/hospital that Fran had gone to didn’t have the means to treat Fran. He would need to seek out other treatment. “But where?”, the anxious mother asked desperately. The doctor shrugged. Most hospitals were not willing to or were unable to treat leprosy. There was a little hospital many miles away in a place called Little Flower that could possibly help him. It was clear up at the top of Bihar, nearly to the border with Nepal. The doctor cautioned that even if there was room for Fran at that hospital, treatment could take up to a year.
For a family of extremely limited means, such a long trip would be difficult. But after heavy reflection, Fran’s mother felt like she had no other option. Fran’s father had died many years earlier and the mother was left with nine children to raise. Fran was the sixth. She would need to ask neighbors to watch the younger brother and sister while she made the arduous journey. She didn’t dare tell the neighbors why she had to go so far, as she feared they would refuse to allow her children into their home.
Finally, all arrangements were made and after offering prayers, Fran and his mother set off for Little Flower in Sunderpur, India. The mother’s unease was increased even more when finally arriving in Sunderpur, she was informed that Little Flower was actually in a leprosy colony. The thought of entering a leprosy colony sent chills of fear down her spine. After coming all this way, she almost felt her courage desert her.
But a mother’s love engenders courage that otherwise would be unthinkable. Holding Fran’s hand firmly, she led him through the leprosy colony and to the little hospital that would hopefully give them the hope that they were so desperately seeking.
Entering the dark hospital ward, Fran’s mother almost gasped in disbelief. This was a hospital? It was nothing but a long room with beds lined up on both sides. The beds were filled with older men, some of them with disconcerting deformities. They stared at the boy dolefully. Many of them had been there sitting on their beds, receiving treatment for leprosy for many months. For some of them, the treatment had taken more than a year.
It was August and the room was stifling hot. There were no working fans, in fact, there didn’t seem to be any electricity; the room was dark even though the sun was blazing outside. (the hospital only has power about two hours a day). Fran’s mother noticed that the windows were so darkened with soot and dirt, they let very little light in.
Finally, the “doctor” examined Fran. He wasn’t a real doctor; only a former leprosy patient who had been healed at the hospital and was now trying his best to help others, in spite of his lack of training. Fran’s mother insisted that he see a real doctor. The examiner shook his head sadly, I’m sorry, but we have no doctor. I’m the best that we have. But the good news is, I think we can cure your son with daily doses of multi-drug therapy. To leave her beloved son in these conditions seemed impossible to the mother. But in the end, having no other alternative she hugged him to her and with tears running down her face, told him her prayers would be with him. Then she left. Fran had never felt so alone.
This was August 2018. Now 12 years old, Fran has been receiving treatment during the past year at the hospital. When I asked our volunteer at Little Flower how Fran was doing, this is what she wrote,
Fran is seen as a light in the hospital. He is the youngest long-term patient at the hospital and given that the leprosy is on his face, he is completely mobile. This allows him to help the other patients, move around the hospital and interact with the staff and visitors regularly. You can often find Fran in the Rising Star Outreach dressing room where he helps other patients with wounds on their feet and legs get to the room and then to the dressing tables where they have the wounds cleaned and bandages changed.
He is often a leader when volunteers come to sing and dance with the patients in the hospital and has the biggest smile and most joyous laugh for a child in his condition.
There was recently severe flooding in the colony. Fran spent hours helping other patients move their belongings to the second floor of the hospital, so they were safe and dry. He also assisted helping displaced villagers get their belongings to the second floor of the hospital so they, too, were safe and dry. He was soaking wet but did not stop until everyone was helped. This is the kind of person Fran is!
We’ve asked our volunteers to tutor Fran every day so that he doesn’t get further behind in his studies. As soon as the patches on his face have gone down, he will be enrolled in the Little Flower School, currently being run by Rising Star Outreach. Given this young man’s determination to make something of his dreams, along with the support and love of his family, we expect him to be an enthusiastic and successful student. With the excellent education offered by Rising Star Fran now has the opportunity to not only improve his own life, but with the possibility of college training now available to him, he can one day return and raise the living conditions of his entire family.
A former Executive Director at Rising Star Outreach, Amy Antonelli, once commented to me that she felt that perhaps that leprosy in the family has turned out to be the greatest advantage these children’s lives could possibly have because it makes them eligible for our programs. With our school graduates going on to pharmaceutical college, medical college, engineering college, and other great careers, these students will have the opportunity for a shot at life that very few children in their original villages will have.
I have reflected on Amy’s words many times. We can often feel picked on, and even beaten down, by life’s challenges. Yet, there are times when those challenges become blessings in disguise. If we can learn to view our challenges as God views them, perhaps we can find the courage to face them and go forward in faith. And as in Fran’s case, if we can learn to see other people as people of unlimited potential, instead of defining them by their challenges, I believe we begin to see them as God sees them. Only then are we able to treat them as God would have us treat them.
Oh, if we could only learn to see as God sees! Each one of us are children of glorious eternal parents. To our Heavenly parents, each child—each life—has equal value. If we could treat each other with this one simple truth in mind, the world would be a different place today.
Article Originally Posted at Meridian Magazine on September 26, 2019; The Boy Who Discovered He Had Leprosy
You can be apart of the #HelpingWhileHealing motto that Fran embodies with his light and service to others. Donate to Rising Star Outreach non-profit today and help heal those affected by leprosy like Fran.Donate! Don’t Wait!
Rising Star Outreach helps empower the leprosy-affected by providing quality education opportunities, medical treatments, and programs to promote community development, skill development, and employment opportunities. Learn more about our programs and continuing efforts here.
Our new Education Director, Dr. Jayaprakash, has just completed two days of amazing teacher training. The comments from the teachers have been so exciting. They’re getting training in the ability to create more interactive and involved classrooms.
Dr Samuel Johnson, a nationally recognized educator, came and spent the first day with the teachers explaining the science behind learning and how different types of learning are processed within the brain. It apparently opened up a whole new awareness of how important it is to construct learning activities that actively involve the students. While this is long standing educational process in the U.S., it is a relatively new concept in India, which has relied on rote memorization as the principal means of teaching ever since the British first established schools there. The teachers were excited to learn about how important their choice of methods can be.
The second day was devoted to brainstorming, practicing, and creating learning activities that helped students internalize concepts being taught.
Dr. Jayaprakash’s reaction to the teacher’s receptivity and enthusiasm was exciting:
“I am pleased to inform you that the two days of training worked wonders. I will send you the feedback I received from the teachers, They are different people now. The motivation level of the school raised to the next level. Please take a look at the trailing mail. This is from the most silent person in the training program…makes me so happy.”
“The two days training class to the teachers of Rising star has been very useful informative–interesting and innovative [This is] a very good change for the academic year 2019/2020. The Child Psychology was applied in learning and teaching. The Audio and Visual Aids of teaching were highly effective [and of great] value to understand. We are all very thankful to the Principal for arranging the two days training!”
As shown above, the response from all the teachers was overwhelmingly positive.
From one of our teachers, Sumatha:
“ It was unforgettable training. We were all motivated, encouraged and stimulated by [so much] information. I would like to say thanks to you and management It is hard for me to express.”
I saw a remarkable documentary about Mother Teresa years ago. One of the scenes in the documentary showed her Missionaries of Mercy going into Beirut, Lebanon during a bombing siege, to rescue babies in an orphanage. When they arrived at the orphanage, the babies were in trauma from the bombing all around them—most of them contracted into tight balls, shaking, with their eyes rolled up into their heads. Upon arriving, Immediately the nuns began stroking them from the tops of their heads to their toes.
A few minutes later when the camera cut back to the babies the change was truly miraculous. They had relaxed and uncurled. They were smiling. It was such a stark contrast I could hardly believe my eyes. The workers in the orphanage also expressed disbelief at the miraculous change that had come to the children in a few short minutes.
That was my first introduction to the power of touch. I have seen this same power manifested over and over again in our work in India.
I remember Elder Stephen Covey suggesting in one of his books that as a parent, if you needed to correct a child, you should touch them very gently on the arm. Why? Because it is nearly impossible to yell at a child if you are touching them lightly. That simple touch seems to calm the raging beast within that we often struggle against when we’re exasperated with a child.
I have seen touch break down barriers, comfort nearly inconsolable grief, and help to control pain.
One hot, dusty day in the Valajabad leprosy colony this power was manifested to me, once again. We had brought a team of volunteers to help build a goat shed for the families in this colony who were wanting to raise goats as a colony micro-business.
The Valajabad Colony is one of our most challenging colonies. The main reason for this is that they don’t own the land their houses are on; they are basically squatters. Consequently, it’s nearly impossible for us to get services for them. Of greatest concern is the lack of water. There is only one well for the entire colony of 30 families. The well only typically has water two days a week. But even that is not a constant. There are times when there is no water at all for weeks on end.
Without water it is impossible to boil rice, the mainstay of all Indian diets. Food has to be eaten raw. The cooking pots cannot be cleaned, nor can the dishes be washed, clothes washed, or bodies washed. Consequently, food poisoning becomes a constant threat to health. Leprosy wounds cannot be cleaned out. Without water, life is nearly impossible.
The houses in this colony are nothing more than mud huts with either tin or straw roofs. Upon arriving in the colony this particular day, there was quite a commotion at one home. Upon approaching the home, I saw what the problem was. A large snake was slithering into a hole in the mud wall of the home. Several women were trying to pull it out with sticks, but with no fingers and in some cases, no hands, their task looked to be impossible.
One woman saw me and screamed “cobra!”. I have to confess, I have a crazy fear of snakes. Much as I wanted to rush forward to help (After all, I have two good hands with all ten fingers!), I had no idea what to do with a cobra should we get it out of the hole! I felt fear running up my back, causing a strange tingling and rendering me nearly paralyzed with fear. I frantically called out to our male volunteers to come to the rescue, however, they were already at the building site, and couldn’t hear me.
Only a few more seconds passed before the snake managed to slide inside the hole of the home completely. At that point the women shrugged and returned to their regular tasks. I have no idea what the owner of the home would do about having a cobra in her home!
Shaken, I ran to find one of the men in our group to see if they could help. They seemed to be a reticent as I was, to go into a darkened home to confront an unknown snake. (These homes have almost no light). Ultimately, everyone returned to the task of building the goat shed.
I was not feeling well myself that day, having awakened with a fever that morning. As the hours passed and the temperature climbed into the high nineties, I began to feel faint and so desperately started looking for shade. There are no trees in this colony, but they did have a tiny community center with a roof. Hoping no one would notice that I was slacking off, I slipped into the community shelter and sat down on an upturned bucket.
I soon realized that I was not alone. Across the small room was an elderly leprosy patient, squatting on the floor, with her arms cradling her stomach. She was rocking back and forth, wailing quietly in pain. I ran out to grab an interpreter. I learned that she had stomach cancer and had recently had surgery. Her stomach was swollen and distended grotesquely. The interpreter told me that this poor woman was in constant pain.
I immediately began digging in my purse to see if I by chance had any painkillers. I found a travel bottle of Bufferin. I was about to give her the Bufferin when I had a nagging thought that perhaps I should call our doctor before dispensing medicine! I called our doctor, explained the problem to him and asked if I could give her some aspirin. He responded with a resounding “NO! If you do that, you’ll kill her. She also has a bleeding ulcer!” Whew! Good thing I followed that small prompting! The thought of this poor woman fighting both stomach cancer and a bleeding ulcer gave me a deeper understanding of her distress. No wonder she was moaning and wailing!
Not knowing how else to comfort her, I also squatted down in the dirt next to her. I started to stroke her hair. Then I stroked her shoulders, sliding down her side to her feet. (It was easy to reach her entire leg because of her squatting position), all the while singing simple Primary songs that my father used to sing to me when I was sick. Gradually the wailing stopped. She leaned onto my shoulder.
Not knowing what else to do, I kept stroking and singing. She closed her eyes and actually smiled as she rested against me. She lightly laid her hand on top of mine, following the strokes.
At one point the colony leader came in and I asked him if she was getting help in the colony. “Oh no,’ he said. “she is an old lady and will die soon anyway.” Shocked at such a callous answer, I asked him how old she was. He replied that she was 54.
That hit me like a ton of bricks. I was also 54! All I could think of was how if I had stomach cancer, my husband would make sure I had access to the best doctors, the latest medicine. I would either have care in a state-of-the-art hospital or would be lovingly cared for in my home. Tears sprang into my eyes as I pondered the injustice of this situation. What is it about poverty that makes life so cheap??
Soon it was time to go. I bade my new little friend farewell. Did I mention that I also felt much better by this time? So the healing went both directions!
The next day we returned with the colony’s new goats, to be introduced into their newly constructed goat shed. When this woman came to see what was happening, she immediately came over to me when she spied me. She grabbed my hand in her own deformed hand and made motions for me to stroke her again.
Better than aspirin? I don’t know. But I know that there is power in loving touch. I have seen it work again and again.
In our families, we often have the opportunity to share that power with a child with a skinned knee, a discouraged teen or an overwhelmed partner. Kids that are hurting have an innate knowledge that they need someone to hug them. How many “owies” have we all healed with a kiss? Somehow as kids get older, we tend to touch them less and less, even though their problems seem to get tougher and tougher.
I think it should be just the opposite. There is nothing like appropriate touch—a hand on the shoulder, a high five, a hand squeeze or a hug to give a struggling kid or spouse renewed confidence, renewed importance, and a sense that they can rise to their challenges. I can’t help but think of how the Savior used touch so often to heal. Let us follow His loving example. Rather than diminishing touch as our children grow, let’s increase it to give them the power to handle their own increasing challenges. It’s free and it takes almost no time. Yet its rewards are amazing!
January 27, 2019 is World Leprosy Day, a day of remembrance and awareness that I suspect will go largely unnoticed by so many throughout the world.
Most people tell us that they are surprised to find out that leprosy still exists today. Typically, the first questions we find ourselves answering are:
Is leprosy treatable?
How contagious is it?
When people learn that leprosy is actually curable and incredibly difficult to spread/contract, more questions emerge. Why does it still exist? Why are people shunned and cast out of society and into colonies? Did you know the term “leper” is actually extremely offensive?
Much of the world does not know that hundreds of thousands are diagnosed and treated for leprosy every year. Many more are left untreated, hiding in fear and shame because of the stigma and discrimination that oppresses the leprosy-affected and their families. So many in the world don’t know there’s a cure. Or that even once a patient has been cured, physical deformities, amputations, and the care of painful wounds continue to be a part of daily life.
Rising Star Outreach exists to help those affected by leprosy to become healthy, educated, and self-sufficient within their communities. By far, one of our biggest challenges is the stigma attached to this disease. One of our main goals is to educate the public and gain global support to overcome the discrimination that forces so many generations to live in such pain.
So what can you do to help eliminate this ancient disease and the stigmatization that comes with it?
3 WAYS TO GET INVOLVED FOR WORLD LEPROSY DAY
1. TELL YOUR FRIENDS
One of the most impactful ways you can educate your friends about our work is to share our videos. These videos are powerful and compelling and are a great introduction to understanding our mission and learning about these wonderful people.
While you’re on social media, post your thoughts, images, or a video sharing your feelings about the fight against leprosy and social injustice. Share this post, follow our accounts, and make your voice heard.
Use our hashtags to spread the word:
2. SUPPORT THE CAUSE
We are proud to say that 100% of your donations go to our programs. We don’t give handouts. We create opportunities for those in the colonies to become self-sufficient. We offer micro-loans to create jobs, perpetual education grants to educate a child, and wound care training and supplies for patients.
On our website you’ll find many meaningful and impactful ways to get involved. Consider the possibility of Sponsoring A Child, make a donation, or get ideas to host a fundraiser on our behalf.
3. STOP THE STIGMA
Education is stigma’s greatest opponent. Simply teaching your friends and family (and encouraging them to do the same) about the history and true cause of leprosy is a start. Let your friends know that the term “leper” is as offensive as the “n” word in America and introduce them to more appropriate terms.
“Person affected by leprosy” or “leprosy-affected” are both terms that appropriately focus on the humanity of the individual and are not inferring that they are their disease.
LEARN MORE ABOUT LEPROSY
WHAT IS LEPROSY?
Leprosy is an infection that is the result of long-term exposure to the bacteria Mycobacterium leprae or Mycobacterium lepromatosis.
Depending on the length of time a patient has gone untreated, the following symptoms may develop:
- White or pale patches on the skin
- Loss of sensation in the affected areas
- Nodules or lumps in the skin located on the face and/or ears
- Ulcers located on the soles of the feet
- Loss of fingers or toes
- Nasal depression
- Paralysis or severe weakness in the muscles of the foot (foot-drop)
- Claw fingers and toes
- Loss of eyelashes
- Inability to blink
The cause of leprosy was discovered in 1873 by a Norwegian scientist named G.H Armauer Hansen. Until that time, most experts on the subject considered leprosy to be a hereditary disease. However, Hansen suspected its cause to be a specific, contagious agent and after prolonged studies, he discovered a foreign bacterium not found in uninfected skin cells. These bacterium were found to be the cause of leprosy, now known as Hansen’s Disease.
IS IT CURABLE?
Yes. After Hansen’s discovery, it took doctors and scientists over 70 years to develop a cure for leprosy.
Leprosy is curable with a treatment known as multi-drug therapy (MDT). Treatment can last from six to twelve months, although a patient is considered non-contagious after just 1 to 3 months of treatment. These treatments are provided free of charge to all endemic countries by the World Health Organization.
If the patient has developed deformities before treatment was started, those deformities can be corrected only by surgery. If the treatment begins before deformities develop, the condition can be completely cured without leaving any visible evidence on the body.
CAN I CONTRACT LEPROSY?
Not likely. A genetic component of the disease means that 95% of the general population is naturally immune to leprosy. Those 5% who are susceptible must be in continuous and constant contact with a leprosy patient to contract the disease.
WHY IS THERE SUCH A STIGMA AGAINST THOSE WITH LEPROSY?
Leprosy is an ancient disease that has been feared and misunderstood for thousands of years. Skeletal remains from the second millennium BC, discovered in 2009, represent the oldest documented evidence for leprosy
Nearly all of the ancient world predominantly believed that people infected with the disease were unclean, untrustworthy, and morally corrupt. It was considered a punishment from God for sin, a result of promiscuous behavior, or a curse on your family because of past wrongdoings.
Besides considering an infected person to be evil, most believed that leprosy was extremely contagious and – upon discovery – a person with the disease was immediately cast out of the home and community (if not beaten and killed). For a person living with leprosy in India, they were considered the most lowly of all creatures and were deemed “untouchable”. Even their shadow was considered vile and unholy and a person could be flogged for letting their shadow cross a “clean” person’s path.
In the late 1880s, doctors believed that contracting leprosy was hereditary. This widely accepted theory led to isolating those infected and segregating them by gender to prevent reproduction and further spread of the disease.
Even with modern medical treatments and education efforts, the stigma attached to a person with leprosy continues to be a serious problem in many developing countries – most especially those with large numbers of impoverished, marginalized citizens and communities. Many people in the early stages of leprosy actually avoid getting seen by a doctor. Sometimes it’s because the hospital won’t admit them, or they’ll be ridiculed and treated horribly there. Quite often, though, it’s because a diagnosis of leprosy might mean losing their job, their family, and their place in society.
Despite so much suffering, there is hope. In the communities where we work, we’re seeing education and life-skills blooming. We’re seeing small businesses take root and enjoy some success. Families are being strengthened. Youth are attending school, graduating, and even continuing on to college. We’re seeing the men, women, and children who used to beg on the streets becoming artists, entrepreneurs, and community leaders.
We are seeing entire colonies lift themselves out of the darkness.
There is still so much work to do. Thank you, to our supporters, for all the ways you continue to get involved.
Photo credit: Jeff & Allison Tueller, Vagabond Original
Rising Star Outreach’s Founder and President, Becky Douglas, was recently featured on BYU-Idaho radio.
In her interview with Brandon Isle, Becky’s message of hope and empowerment inspires us all to be a force for good.
Make a difference today!
You can be the one to make a difference in the lives of our students.
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