MEDLIFE

At a recent Mobile Clinic in the steep hills of Nueva Esperanza, Renelmo Chavez arrived early in the morning and was first in line with his son, Dixon, riding on his shoulders. Dixon is 16, but he's unable to walk on his own due to severe rheumatoid arthritis that began when he was just five years old.

The causes of juvenile arthritis are unknown, though it is usually an autoimmune disorder, which means that the body's immune system mistakenly attacks healthy cells and tissues, causing inflammation and joint damage. In children, the resulting swelling, pain and stiffness severely limits growth and function. There is no cure; treatment focuses on maintaining quality of life and function with physical therapy and medication. Though Dixon's condition is currently in remission, it's left him with paralyzing pain in his hands and knees. He had a wheelchair, but it's useless in the treacherous terrain near his house.

For years, Dixon's dad carried him down the winding path to the paved street below each morning to take him to school. But now Dixon is too big and it's too much of a strain for his father to carry him every day. So while his dad still leaves early in the morning to work, Dixon stays home with his 13-year old sister Ruth, who goes to school in the afternoons. His mother works as a housekeeper in another district of Lima, while his other three siblings go to school and work to support the family.

Dixon likes to spend his time watching soccer games, and says he wants to be able to walk again. He'd also like to go back to school, where his favorite subject was English. He already knows the basics: "how are you?" and "my name is." Perched on a wooden chair at the doorway of his house, he helps his father to feed the chickens that run underfoot.

Renelmo, who moved with his family to Lima seven years ago so that Dixon could be treated in the national children's hospital, is completely devoted to his son's care. And between trying to earn a living driving a mototaxi in another part of town, and carrying Dixon to his various physical therapy and doctors' appointments, he stays pretty busy. "Life here is hectic," he says. "There are many things we need that we can't get."

MEDLIFE follow-up nurse Ruth Verona is on the case, accompanying them to appointments and making frequent home visits. She hopes medical specialists may help restore some of his range of motion. "The physical therapy is on hold for now, until we get his X-rays back," she says. "We have to make sure that it will not cause any further damage to his fragile joints and bones."

We're also working with Renelmo and volunteer engineers on a new project: building a wheelchair ramp outside the house that would give Dixon some mobility, and hopefully ease Renelmo's burden as well. "I just worry sometimes about what will happen to him when I can't take care of him anymore," Renelmo says. Though Dixon is nearly as big as he is, his father launches him onto his shoulders easily and without complaint as he heads out to yet another doctor's appointment.

Milagros Ponte, known to her parents as "Milly," kicks up clouds of dust as she runs up the rocky hill ahead. "Minnie!" she suddenly shouts, and scoops up a small black-and-white cat, who reluctantly puts up with the attention. Showing visitors around the small one-room house she shares with her parents, Milagros sounds much like any other 5-year old, proudly pointing out of her neatly arranged collection of Barbies and stuffed animals. An only child, she likes to play with her cat and neighboring children and help her mom water the flowers in their small garden plot.

But Milagros, who lives in a high extension of the Virgen de Cocharcas community, was born with congenital auricular atresia -- a birth defect that left her with only a partially developed ear on one side, and a small vestigial structure on her cheek. Though her inner ear was healthy, her hearing could be affected as she developed because the sound would not be able to travel into the ear canal.

Despite their humble circumstances, her parents have done their best to give her everything she needed for a happy childhood, sometimes going without themselves. "Life can be really sad here at the top of the hill," says her mom Glorinda. "But at least now we have our own home, our own little plot of land. Sometimes we worry, but never in front of her. We just want a better future for our daughter, like any other parents."

But when they tried to get Milagros's ear corrected, they were stuck. They couldn't afford to pay for the operation, and SIS, the state insurance for the poor, wouldn't cover the procedure because it is largely cosmetic.

We already knew Milagros as the high-energy, happy-go-lucky little girl who always came running up to meet us when we visit her community. So when her parents asked us for help, the MEDLIFE follow-up team made a plan. 50% of the cost of Milagros's surgery, as well as necessary medications, were covered by the MEDLIFE fund in order to make the operation a reality. She finally received the operation just two weeks ago, and is now back at school after staying home for a week to recover.

Even right after the surgery, she never lost her high spirits. "It hurt at first, but now I'm fine," she says, smiling widely as she turns her attention back to playing with her toys. "She's very brave," says Glorinda. "She was so happy that she was going to get the operation, she didn't even cry or complain." In the operation, the extra tissue on her face was removed, and the fold covering her ear canal was opened. In a few years, she will have an additional surgery in which doctors will take cartilage from another part of her body and use it to form the outer structure of the ear.

For now, Milagros is looking forward to going back to school to play with her friends. "She's very excited," Glorinda told us. "She can't wait to be able to use earrings."

Ariana and mom Nelly at home in Oasis of Villa El Salvador

Ariana Muñoz has already seen more than her share of excitement in her 18 months of life, starting with the unusual circumstances of her birth. When her mother Nelly felt she was going into labor, her husband was away at work, and she hailed a mototaxi, the cheapest and most common form of transport in her sandy settlement of Villa El Salvador. Nelly laughs as she recalls how the driver, seeing her pregnant and in obvious distress, told her, “Just don’t give birth in my mototaxi, lady.” But the baby couldn’t wait; before they reached the hospital, little Ariana was born. At the hospital, doctors cut the umbilical cord and declared her a healthy baby, weighing in at just over 3 kilos.

But not long after taking her home, Nelly had a nagging feeling that something was not normal about her baby. “My heart told me that there was something wrong,” she says. “She snored like a cat in her chest, and she would drink milk and go to sleep for long periods of time without waking up to eat more.” She took Ariana to the hospital at six days old, but doctors again assured her that everything was fine.

One month after Ariana’s birth, Nelly noticed that she was having trouble breathing and rushed her to the hospital. When the doctor saw her, he told Nelly to run home and prepare a suitcase of clothes for her and Ariana, because they wouldn’t be leaving the hospital for a while. At one point, she went into respiratory distress, and had to be revived with a defibrillator. X-rays revealed that her heart was malformed from birth. She had to receive an operation immediately, and the doctor assured Nelly that they would do their best, but that she might not survive. “I had to leave her because they wouldn’t let me go into the operating room,” Nelly said. “But first I went to her, and I held her hands, and I told her ‘I love you and you will always be in my heart.’”

After hours of agonized waiting, the doctors emerged to tell Nelly that the operation had gone well and that Ariana was recovering. They wondered why Nelly had waited so long to bring her in; her heart was so tiny and weak that her organs had become agitated by breastfeeding. “They told me that I have grounds to sue the first doctors,” Nelly said. “If they had detected the problem earlier, it might not have gotten so bad.” In the overcrowded and underfunded public hospitals in Peru, this situation is sadly not uncommon.

Because of the heart defect, her development is delayed compared to other children her age. At one year and six months old, she spends most of her time lying down quietly, because the strain of walking and sitting up tires her out too quickly. Nelly tears up when she regards her younger daughter. “It hurts to know that she may never be like other children and able to do more things,” she says.

Ariana still needs a more complex corrective procedure for her heart, which will hopefully take place with the arrival of foreign surgeons to Peru’s children’s hospital this fall. If the operation succeeds, doctors have told her, she will be able to lead a normal life, though she will still have to be careful not to overexert herself. MEDLIFE field nurse Meri is hopeful after the success of a similar operation for our patient Eloy earlier this year. 

Before she can go through with the surgery, Ariana has to reach a healthy weight of 12 kilos, a challenge in a home where the family eats just one meal a day, usually potatoes and rice. On a recent home visit, Meri brought pediatric nutritional supplements for Ariana, and negotiated with the local comedor to allow the family to take home a free meal every day. Ariana is now up to 9 kilos.

The family home from outsideProviding even the basics for their daughters is difficult for the Muñoz family, which has lived without electricity in a decaying shack in Oasis for six years now. Both husband and wife are from the mountainous provinces of Peru; Nelly came to Lima for a job as a domestic employee and met her husband here. Now she stays home with her daughters, Ariana and four-year old Maricielo, and collects junk and recycling to make some extra money. Nelly’s husband, Seferino, finds work in carpentry and construction when he can; it pays 30 soles (about $10) a day, with no health benefits. Seferino has epilepsy as the result of getting hit by a car when he was a teenager. The money paid as a settlement by the driver was spent by his family members before he turned eighteen, and so he endures occasional seizures with no medical treatment because he can’t afford it. “Any day he takes off of work is a day without food for our daughters,” Nelly says. Making matters worse, he risks losing his job and serious injury if he experiences a seizure while at work. Seferino is also entering MEDLIFE’s patient follow-up program, and we will be connecting him with neurological treatment for his condition.

In the midst of all this tragedy, Nelly struggles to remain positive. “Sometimes when I see Ariana happy, it makes me happy,” she says. “But sometimes I cry alone thinking about how we are going to survive. Ariana can feel when I am sad, and she touches my face to check for tears.”

Carmen Solano died of a heart attack last week at the age of 42 after a two-year battle with cancer. She is survived by her two daughters, ages 13 and 15.
We met Carmen when she came to a Mobile Clinic in her community, Laderas de Nueva Esperanza, in 2011. She had noticed irregular lumps in her breast, but hadn't seen a doctor because she was unable to afford it. At the clinic, she was diagnosed with stage 3 breast cancer, and became a MEDLIFE follow-up patient. Despite the diagnosis, Carmen always remained positive and concerned more for the welfare of her children than her own. She lost her job when her boss found out about her illness, making it even more difficult for her to pay for treatment. MEDLIFE supported her through this time, and field nurse Meri took her to and from each chemotherapy session. When she contracted an infection from her old straw mattress, we bought new ones for her family, and we completed a staircase project next to her house. She was always surprised and grateful for any support, and conversed warmly with everyone who came to visit her. Even as the illness and treatment weakened her body, she retained an inner strength that made her a joy to be around. She became an advocate for other women in disadvantaged communities, educating herself about women's health and encouraging others to get screened early to prevent the spread of cancer.

For all of us in the MEDLIFE office, Carmen was more than a patient -- she was a friend, and an inspiration. MEDLIFE staff members share their memories:

There are few people who can inspire your own life with their example. Carmen was one of them. Her strength and her fighting spirit made her an extraordinary person. Carmen was one of those superwomen who should not remain anonymous, but poverty hid her from the world. Carmen never gave up, and for me, she never lost the battle.
-Rosali Vela, Assistant Director of Communications

Carmen has always fought to beat cancer, and when we went to the hospital for her appointments she would give advice to other people in the line, telling them always to get their checkups. She was one of the symbols of the expansion of government coverage of cancer treatment in the "Esperanza" program. When I visited her house, she was always busy taking care of everything like a normal housewife, as if she wasn't sick at all. Her primary concern was her daughters. 

There are many things I could say about Carmen but what she reminds me today is that she never stopped fighting. Even at the end she still thought about what would come tomorrow. Her life continues in all that we learned from her.
-Meri Lecaros, Field Nurse

Carmen was one of our first patients and I still remember with great sadness when we learned the results of the mammogram that indicated that her illness was very advanced. But at the same time I felt glad and proud to see how she faced the cancer bravely. In spite of growing up alone and without a family she decided to fight and continue to put her daughters first. Her strength and courage in facing everything, her sensitivity, solidarity and humanity, arose in the middle of poverty and need, and despite her limitations she always found a way to help others, which is why she made many good friends by being her beautiful self. Patients like Carmen become more like friends or sisters, and it is sad for me to say goodbye to Carmen, my friend. I know your example, your optimistic spirit, your love and friendship will continue in all of us who knew you.
-Dr. Jose Rodriguez, Medical Director

We continue to support Carmen's family through this difficult time.

Luis Angel Tuso is an eleven-year old who enjoys art class and dreams of becoming a police officer when he grows up. When he began complaining last year of intense headaches and vomiting, his parents knew something was wrong. But with four children living in the sandy desert settlement of Oasis in Villa El Salvador, they had few economic resources for medical treatment.

They took Luis to the Hospital Maria Auxiliadora, which accepts SIS, the government health insurance program that covers families living in extreme poverty. There an MRI revealed a diagnosis of hypertensive obstructive hydrocephalus, an accumulation of fluid in the brain, caused by a tumor blocking the flow of cerebrospinal fluid through the brain.

He received surgical intervention that same day, and a shunt was placed in his brain to drain excess fluid and relieve the pressure on his brain tissue. Luis recovered smoothly from that procedure, but the underlying problem- the brain tumor- required a more complicated treatment. Because of the tumor's proximity to important brain structures, doctors said, it would require stereotactic radiosurgery, a noninvasive procedure that involves high doses of radiation targeted to precise points with the end goal of reducing the size of the tumor. But the expensive and high-tech procedure was not available in Maria Auxiliadora; in fact, just 3 hospitals in Lima are equipped to perform it. The procedure would cost 18,000 soles, or about $7,200, an amount that the family could not afford. Luis's father went to each hospital but none of them would accept his insurance. He began the process of appealing their decision, assembling the paperwork and references to prove that the family truly needed assistance. They held a pollada in their neighborhood, selling chicken in order to raise money for the medical costs, but still didn't come close to the amount they needed.

At this point, Luis's father got in touch with MEDLIFE, who he knew of from the Mobile Clinics that had recently been carried out in their community, and asked for help. Meri Lecaros, MEDLIFE's Patient Follow-up Coordinator, set her sights on the Clinica San Pablo, she says, because it's known to be the most advanced in procedures like this one. "They told me they 'almost never' want to accept people with SIS, since they are private," said Meri. "But we searched for the connections needed to give the family a boost in the process they were already working on."

Meri decided to use her contacts in the Ministry of Health, where she previously worked as a health promoter. She got in touch with the directors of the network of hospitals in southern Lima, and says "They gave me hope, making calls and coordinating to gather the necessary documents." 

That speeded up the process, and last Saturday, Meri accompanied Luis and his father to the Clinica San Pablo, where they performed another MRI exam. Luis was nervous, but Meri reports, the doctors were patient with him and able to complete the exam. The doctors will now meet in order to determine the best course of treatment for Luis. The recommended treatment requires seven sessions over the course of weeks, all of which will be covered by SIS. 

His parents say the unexpected turn of events has been "a blessing from God." Meri says that Luis's story is a success for not only his family, but for others who may benefit in the future from the connection made with a clinic that would ordinarily be inaccessible to low-income patients. "There are many rights available to people through the system, but they just aren't publicized," Meri says. "You have to fight for them."