Going to Yoli.

A little girl with a life-threatening hemangioma gets medical attention, in a place where healthcare is hard to come by.

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Katia Cnop is currently MHA | WK ‘ s Complex Care IMG_7165Coordinator. She has worked in Guatemala since early 2014 and will attend medical school starting in August 2016. She likes rock climbing, and in the future she hopes to work with underserved communities in the United States.


For Context: Vera Goldberg recently completed her 3rd year at Harvard Medical School, and is now taking a gap year to work for MHA | WK as our medical intern. She plans to become a pediatrician, and work with underserved communities in the United States, Guatemala, and Gambia.  *All patient and family member names have been changed for patient confidentiality.*

Vera has been working with Yoli and her family since August. She met Yoli’s mother, Mari, in their small village where Vera and a colleague had been doing malnutrition work. The way Vera tells it, Mari brought Yoli to clinic one day in May, but only after all the other mothers had left. She was afraid they would judge her, blame her – as if the tumor swallowing the right side of her daughter’s face was her fault. Yoli had seen a doctor some months before, but her family could not afford the trip to the capital city for additional testing. She was 6 months old, and her hemangioma had grown to consume her right eye, ear, and the back of her head.

Since then, Vera has worked extensively with Yoli’s family – she has returned to their village many times to visit, assess Yoli’s health, and provide medication. She knows the village well. So when it came time for this blog post, Vera asked if I would write about my first impression of Yoli’s village, because for me, the impression is fresh. I was there for the first time last Saturday – six days ago, on December 11th.

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Vera with Yoli.

I live in the center of Tecpán, where the Maya Health Alliance | Wuqu’ Kawoq main office is located. The town is bustling, urban, more than 10,000 people live here and the vast majority are Kaqchikel-speaking Maya. Yoli lives more than 7 hours (via car) and 225km north-west of Tecpán – only a few miles from the Mexican border. I knew it was remote; Vera had told me. It sits in a region that experienced many massacres during the 36-year civil war. She had said there is no electricity or potable running water, that it takes 10 hours to get there from Tecpán via bus because of infrequent public transportation, and that sometimes she walks from the nearest town, because her feet will get her to the village faster than if she waited for a pick-up truck to pass by.

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On the way to Yoli’s village.

We drove by car for 6 hours before we hit the dirt road. In California, where I am from, I have some experience driving in dry and rocky riverbeds in the Mojave Desert. This road, the only road that leads in and out of Yoli’s village, makes those Mojave riverbeds seem like smooth glass. We jostled around for a little less than an hour – crossing a river, without a bridge, weaving between plots of failed corn crops, and passing the occasional wooden hut. The region had been hit hard by drought the last couple years, no doubt affecting those living nearby.

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The inhabitants of Yoli’s village speak Popti’ and Mam, and the village itself is seemingly new – recreated after the civil war that ended in 1996. It’s small, consisting of several long, dirt streets lined with concrete or wooden houses, and has the classic markers of a place where work is not consistently available. Men hang out in groups around town – playing cards or listening to the radio. Women, with their children strapped to their backs or walking by their sides, saunter between houses. The chickens, piglets, and turkeys roam free. The village is seemingly removed from the outside world, and yet more than a handful of people live there.

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We drive a bit further, park the car next to a woodpile, and get out. It is warm – a lot warmer than Tecpán. We hop a barbwire fence, and start down the small path towards Yoli’s house.

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Vera and Mari, with Yoli strapped to Mari’s back.
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View from the path to Yoli’s house.

Yoli is a special case – she had one of the largest hemangiomas we had ever seen. As Complex Care Coordinator, I did some of the fundraising to finance her care. I’ve read her medical record, seen her periodic update photos, and visited with her family when they’ve passed through Tecpán on the way to the capital for testing. Vera did most of the heavy lifting for this case, but even so, I was excited to see how this little girl was progressing.

The change since the last time I saw her is remarkable.

Yoli’s ear is now fully visible, and she can even slightly open her right eye.

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Vera, Mari , and of course little Yoli.

We visit with her family for over two hours – her cousins and siblings all come out to greet us. Throughout the entire visit I can’t help but think what would have happened if this little girl, with a life-threatening hemangioma, had never received care. Yoli’s family has neither the financial nor the linguistic ability to navigate the public healthcare system in Guatemala City alone.

Maya Health Alliance | Wuqu’ Kawoq (MHA | WK) works in over 41 communities, and sure, many are hard to reach, just like Yoli’s, but there is one large difference. These communities have us – we are their access to medical care. The MHA | WK staff work day-in and day-out to provide comprehensive women’s health services, chronic disease management, malnutrition prevention, general primary care, and much more. These communities have our large team to collaborate with every day. Yoli’s community just has Vera, and, when the patients can travel further south to where we work, our team to back her up .

As we were leaving, I thought to myself, how many more villages exist like Yoli’s, just enough off the beaten path to be forgotten – where there are no doctors, clinics, or available medications, but there are people with life-threatening illnesses, who need healthcare. How many Yoli’s are out there, tucked away miles from a highway, their mothers’ unable to seek care? Then again, maybe this is how the work MHA | WK does begins. After all, each one of the communities where the MHA | WK team now works started off just like Yoli’s village – forgotten by the public system, unknown by the myriad of organizations working in Guatemala. So maybe, Yoli’s case signifies the beginning of this village being remembered and receiving the care its people so desperately need.

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Yoli with her cousins.
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