Out of Africa Winterport woman helps Tanzanian boys find medical help

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WINTERPORT – Sitting on a stool in the quiet kitchen of her family’s home, Emerald Russell gets excited when showing off pictures of her trip to Africa last year.

There’s the 20-year-old Russell on Mount Kilimanjaro – so what if she made it only two-thirds of the way up the continent’s tallest mountain? There are the Masai tribesmen she encountered on her travels. And there’s the former Hampden Academy basketball standout with other Americans she met on her 1 1/2-month trip.

The stillness of the kitchen is broken when a door to the Russells’ basement swings open and two small boys, chattering in Swahili, slowly walk past Russell and a visitor. The boys tentatively head for a set of doors that will take them to a green backyard with a fine view of Marsh Bay.

It’s a sight the boys, who are nearly blind, probably will never be able to appreciate.

Russell, meanwhile, watches every move the boys make as they walk through the kitchen. As soon as she sees where they’re going, she springs into action.

“Hats and sunglasses,” she calls out. “Don’t let them go outside without their hats and sunglasses!”

The boys stop in their tracks. The kitchen fills with more people – Russell’s mother, Carolyn, her sister Joanne Arnold of Schenectady, N.Y., and family friend Ruth Fitzpatrick of Winterport – as the group starts to hunt for the boys’ hats and sunglasses.

The younger of the two, 9-year-old Ally Amir Sufian, taps on his pants pocket to indicate his glasses are in a safe place. Suitably attired, Ally and 11-year-old Emmanuel “Ema” Eden Tenga head outside.

“Even though they shouldn’t be outside right now, it’s better than what they’re used to,” Russell said earlier in the afternoon as she watched the boys play on the lawn with toy trucks and a soccer ball. “It’s all we can do for them right now. It sucks because they’re not going to live that long.”

Ally and Ema, who come from Tanzania, have xeroderma pigmentosum, a rare genetic defect that causes extreme sensitivity to ultraviolet light. Their blindness is a result of XP.

Russell met the boys when she was volunteering at Mwereni Primary School. It has an enrollment of about 800 children plus about 30 visually impaired pupils who come from all over Tanzania.

Of all her travels and the sights she saw in Tanzania, Russell found herself drawn to the school’s blind children. In them, she saw something close to her own life. Russell’s sister Abby, now 24, has visual and hearing impairments as a result of a brain tumor. With her own parents busy taking Abby for treatment, family friends and neighbors often watched after Emerald and her brother, Adam.

Now, almost a year since she left for Africa, Russell is the one watching over children who need her after she spearheaded a campaign to raise thousands of dollars for the boys and their English-speaking chaperone, Dastan Anthony, to come to the U.S.

Part of the trip would be fun – visits to New York City, to Manchester, N.H., where Russell attends St. Anselm College, to her home in Winterport and to Camp Sundown in Craryville, N.Y., where sun-sensitive children play at night and sleep during the day.

But Russell was hoping something even more special and serious would happen.

While making plans for the boys’ trip, Russell had inquired about surgery for Ally, who had a cancerous growth on his lower lip because of his XP. Previous operations in Tanzania hadn’t prevented the tumor from coming back.

There was little optimism that Ally would be approved for surgery. Was there a doctor or hospital that would take on a Tanzanian boy with no insurance, accompanied by a legal guardian not related to him, and a girl from Maine?

Driven by the need to help the boys – perhaps knowing how others had helped her and her family when they needed it – Russell kept pushing. Dealing with red tape and language differences would be frustrating. In the end, the boys’ trip would pay off beyond what Russell imagined.

“It’s been amazing,” she said. “It’s been a miracle every day.”

Basketball or Africa

Emerald Russell graduated from Hampden Academy in 2003 as a four-sport standout best known as the Broncos’ talented starting forward in basketball.

After racking up awards in her senior year – All-Maine honorable mention, McDonald’s Senior All-Star, first-team All-Big East Conference in Class A, Eastern Maine Class A all-tourney honorable mention – she headed for Division II St. Anselm to continue her career.

Russell had a solid freshman season, appearing in 19 games.

But other campus activities appealed to her, too. Although she loved basketball, she wanted more time to devote to volunteer work. Russell decided to go to Africa for the fall 2004 semester. It meant leaving the basketball team.

“If there were more hours in the day I’d stick with basketball, and I still love the game,” she said. “But I’ve come to realize that it’s not who I am.”

After some research Russell found Cross-Cultural Solutions, a New York company that organizes trips to Asia, Africa, Eastern Europe and South America where travelers live and work, as volunteers, with the people of the region. After clearing the trip with her parents and arranging to take the semester off, Russell ended up in Moshi, a town of around 144,300 people near Tanzania’s northern border with Kenya.

The Cross-Cultural Solutions group of about 20 people spent mornings at volunteer postings and afternoons taking excursions around the country. That meant jaunts to the 19,341-foot Kilimanjaro, massive Lake Victoria, and the island of Zanzibar, just off the coast of Tanzania.

Russell’s mornings at school, however, were even more meaningful.

She worked with third-graders for about an hour each morning. She soon started spending more time with the blind children, playing with them or helping them read Braille. She could tell one of the boys she met had something wrong with him in addition to his vision problems. His lips bled and looked like an open wound.

“It was awful, but he was a fun kid, always crazy, running around,” she said.

That little boy was Ally, and Russell soon found out that he had XP, a disease she had never heard of. Not many people have – the instance of XP in the U.S. is one in 250,000, according to an article on emedicine.com.

The root of XP is the body’s inability to repair damaged DNA after sun exposure. At the minimum, brief exposure to the sun will cause freckles and blistering. At its worst, XP can cause eye lesions that result in blindness, increased incidence of cancer of the lips, eyes, mouth and tongue, developmental disabilities, hearing loss and mental retardation.

The damage is often irreversible, and fewer than 40 percent of patients survive beyond age 20.

Children like Ally and Ema are especially at risk. They’re growing up in a nation with poor access to sunscreen and living almost on the equator, where the sun is intense.

As Russell learned about XP she also met Dastan Anthony, a 30-year-old man from the southwestern Tanzanian city of Mbeya. He was volunteering at the school, serving as a dorm father to Mwereni’s blind children and preparing to go to college in the fall.

After her time in Tanzania ended, Russell spent a few weeks with a Cross-Cultural Solutions program in Costa Rica. She returned to St. Anselm for spring semester but couldn’t shake the bond she felt with the XP kids at Mwereni.

Feeling the need to do more, Russell contacted the XP Society, which, like Camp Sundown, is also based in Craryville, N.Y. Officials at the society told her if she could raise money for plane tickets, passports and visas, the boys could attend the camp for free.

Russell knew she would have to start raising funds for travel expenses for the boys and Anthony, who agreed to serve as their guardian and translator.

Russell approached St. Anselm’s Meelia Center for Community Service, which dedicated its spring project to raising money for the boys’ trip. The project – a Wiffle ball tournament – brought in money, and other student organizations chipped in, too.

Russell spoke at schools and other organizations, and donations started to roll in.

“We need someone like Emmy to come,” Anthony said. “For us, it is the first time for someone to support us like this, to raise money. We didn’t have that before.”

About $8,000 later and after some hassles with the boys’ visas, everything was secured. Ally, Ema and Anthony arrived in New York on the Fourth of July. After a week in the city, Russell and her mother, Carolyn Russell, drove the three Tanzanians to the National Institutes of Health in Bethesda, Md. The boys were to be examined and evaluated there, but likely wouldn’t be able to get treatment.

Russell was hoping someone would give her good news about Ally’s cancer. That would come, but not yet.

Toys for the Tanzanians

If XP’s rarity was ever a blessing for the Tanzanian boys, it happened during their stay in Maryland.

Russell said doctors at the National Institutes of Health were eager for a look at the boys. The group’s stay at The Children’s Inn at NIH, similar to the Ronald McDonald houses around the country, was free. The Children’s Inn is packed with games, computers and toys to keep kids and their families busy.

“They were very happy,” Anthony said. “I realized this. They were very happy. I think they were playing more. It’s not the same in my country. They were finding a lot of things to play with. We don’t have a lot of toys like they have here.”

The Russells and the Tanzanians spent eight-hour days visiting with neurologists, dermatologists, optometrists, audiologists – almost any kind of doctor associated with XP. Through it all, the boys submitted to whatever the doctors wanted.

“They were so loud and funny and everyone loved them,” Russell said. “They were like superstars for a week.”

Carolyn Russell grew closer to Ally and Ema during the Maryland trip, too.

Familiar with them only through her daughter’s pictures, and knowing of the plight of their home region in Africa only through the movies, Carolyn Russell was just as taken with the boys as was her daughter. She watched as they reveled in the attention at NIH.

Carolyn Russell gained a new respect for her daughter as Emerald shepherded the group in NIH with just Anthony and an additional interpreter available for help.

“It was absolutely astounding the level of respect these physicians gave this 20-year-old girl,” Carolyn Russell said. “They could not wait to meet her, and they were so excited that she brought these boys to them, because this is what they study.”

More than that, the experience has allowed the Russells to reflect on their own family history. When Caroline Russell and her husband, Bangor lawyer Ed Russell, started spending time away from home while Abby Russell was treated for a brain tumor, they relied on friends and neighbors.

At the time, Carolyn Russell said, it was hard to imagine how that childhood would affect Emerald. Watching her daughter with the Tanzanian boys, Carolyn saw that the family’s experience taught Emerald valuable lessons.

And it has made the Russells even more grateful for those Winterport neighbors who helped raise Emerald and her siblings.

“There’s an old African proverb that says it takes a village to raise a child,” Carolyn Russell said. “There were a few families in this little village of Winterport who helped me raise my children, so when [Ally and Ema] came along it was here we go again, we have a few more to raise.”

Carolyn Russell has been with the group for most of the trip. She also would join the group for what turned out to be the journey’s most important leg.

After all the poking and prodding in Maryland was over, Emerald Russell brought Anthony and the boys to Winterport. They stayed for a few days, and then it was off to New Hampshire to meet some of the people who helped raise money for the trip.

From there, the group went to New York for their session at Camp Sundown, where the boys splashed in the indoor pool.

But their time at camp was cut short. Thanks to Russell’s persistence, the group got another trip to Maryland for Ally’s big moment.

‘They deserve to live a full life’

Last year, when Russell called the XP Society to find out whether Ally and Ema could be treated in the U.S., she had a slim hope that something could be done for the boys, especially Ally, whose growth on his lip had twice been scraped in Tanzania. Doctors there hadn’t yet removed the tumor completely.

But Russell was realistic. Most likely, because of logistical and ethical issues, Ally could only be examined and evaluated.

While she and the boys were at Camp Sundown, Russell began making phone calls to plead Ally’s case.

Russell, Anthony and the boys left New York for Maryland last Sunday, not knowing what exactly what would happen once they returned to NIH. But everything started to fall into place.

Doctors at NIH agreed to remove the lesion – for free because of the research opportunities the surgery presented – but only with a signed release from Ally’s mother, who lives in a remote village in Tanzania. After telephone calls and faxes back and forth to Tanzania, translations in and out of Swahili and English, and visits by Mwereni’s headmaster to Ally’s mother, the forms were signed.

Anthony also got permission from his college to start later than usual. Without that permission, Anthony would have had to go back to Tanzania early and Ally wouldn’t have been able to have his surgery without the man who was his legal guardian.

That she had managed to get Ally his surgery began to sink in for Russell.

“It’s above and beyond what I ever expected would happen,” she said.

Ally was scared, Russell said, because previous procedures in Tanzania had all been painful. But Thursday morning doctors successfully removed the cancerous lesion. Later in the afternoon Ally was up and moving around and had even talked to his mother on the phone.

“He’s still got to be careful. He’s still got XP,” Russell said Thursday evening from Maryland. “But he doesn’t have cancer. So there you go.”

Ally will be healthy enough to travel by Aug. 9, when the Tanzanians will fly home from Washington, D.C.

In a few weeks Russell returns to St. Anselm to continue her psychology studies in the hopes of someday having a career as a play therapist or working with children who have cancer.

Russell wishes the boys could stay. But she knows they’re going home with a set of experiences most poor Tanzanian children will never have – and there’s at least one Tanzanian boy who is cancer-free.

“I wish I could have them move to America and be safe and lock them up in a sunproof room and let them live here,” she said. “But Tanzania deserves these boys and they deserve to live a full life. Tanzania needs them and I know they’re giving people, they’re smart people, and they can make huge changes in the world.”