How do you give up one child to save two?

Georgia Gray, a student at Oxford University contacted Asante Mariamu last January, offering to help our organization.  We were fortunate that this compassionate and energetic young woman volunteered to travel to Tanzania with Doug this summer.  Here is her story.

About a month ago I travelled to Tanzania, under the guise of gathering information for my final year university dissertation.  I’d read all the papers recommended by my supervisors, scoured the library and emptied online journals of any relevant papers.   Ask me the difference between ocular and oculocutaneous albinism and I’d be able to reel off the facts in the order they were discovered. Tell me to draw a genetic diagram explaining albinism inheritance and I could do it in a heartbeat.  Colour coded.  Tell me that the trip I was set to embark on made this information completely redundant and I’d probably have a hard time believing you.

We’ve all read the stories, and heard the news reports detailing the absolutely horrific crimes going on in Tanzania today.  And as a fledgling student, eager and willing to solve the problems of the world through my one paper, I couldn’t be more excited to tackle the problem head on.  Surely, I thought, this wasn’t that complicated. 

I got my first taste of reality no more than twelve hours into the trip.  Speaking to Reverend Bartholomew of Bishop Mpango School, I asked him about any stories of attacks within the region.  Had any albinos he knew been attacked?  He looked at me like I was from another planet, before affirming the question, that yes of course he knew of attacks.  Yes the children in his school had been attacked.  Yes the people we were to meet the next day had been threatened countless times, were scared to leave their own home, had hidden themselves or their family for many years.  ‘Look at this woman,’ he said to us just the morning after.  ‘This woman had one of her children taken and murdered, with the attackers threatening the life of her two non-albino children in exchange for her albino child.’  She had had to make a decision so disgustingly horrifying, so completely against every primal extinct we have; in order to save her other two children. 

I couldn’t even begin to comprehend how this woman was still here, still in fine mental health, with another child breastfeeding quietly at her chest.  But I was soon to learn that such stories were commonplace in these areas, that everyone, be it mother, father, brother, sister or neighbour had another horrific tale to divulge.  It was routine, and for every mother who had had her child taken, there was a father who could not even mourn for his deceased child because of the all too common act of grave-robbing albino graves.  

The people we met out there, whether they were church leaders, or fellow non-profit organisations were all so startlingly brave in the face of such limited community support.  They were going into extremely rural areas and combating an ingrained social issue with extremely limited financial or physical support.  It was often a thankless task: the government had little involvement, and the people we were helping were at direct threat from the community they lived within.  Thankfully, we worked with people on the ground who saw it as their utmost duty to help the most vulnerable members of their society.

Georgia has more to say about her trip, and the bravery she encountered.  Her next post will introduce one of our heroes, Sister Maria Helena.

Doug gets his goat(s)

The Asante Mariamu team traveled into the Serengeti to meet rural villagers with albinism‬. Here is Doug with Ngongo (the person with the stick) and one of his 13 wives (far left). Ngongo has 3 grandchildren with albinism, and the goats were given to thank Doug for holding the first Albinism Awareness Day in the region. The grandchildren were in school with Sister Helena. It was one of Doug's favorite days. 

NBA star Stephen Curry visits Tanzania, meets Kabanga Center's coordinator

As part of the Nothing But Nets campaign, NBA basketball player Stephen Curry recently visited Tanzania to distribute anti-malaria bed nets.  While in the Kigoma region, he met Mr. Samuel Stephen, who is in charge of the Kabanga Protectorate Center, home to almost 70 children with albinism.  Mr. Stephen explained the dire situation faced by the albino children housed at Kabanga, and also the impact the lack of adequate drinking water on their health and education.

Asante Mariamu witnessed the effect of the lack of clean drinking water last summer.  In addition to the dangers of dehydration, the overcrowded facility lacked adequate washing facilities and working plumbing.  The lack of clean water created serious health risks, but also diminished the basic human dignity of the children and families living at the center.

Mr. Stephen asked the NBA star for help in raising the $25,000 needed to solve this problem - which is all it would take to create a new sanitation system, including a new well.  It seems like such a small amount, but for the close to 200 disabled children living there, it could make a world of difference.  I am keeping my fingers crossed that Stephen Curry will find a way to help.

A Student Leaves Kabanga Protectorate Center to Excel in Secondary School

I first met Asrafil in March of 2012 on my first trip to Kabanga.  Gangly with a friendly smile, we made an easy connection.  At first, I thought his name was Rafiki, which means "friend" in Swahili.  I am not sure if it was a miscommunication or simply an expression of his nature.

Asrafil told me that he was 18 and just finishing up primary school, and that he wanted to be an engineer or architect someday.  I asked him if he was going to go to secondary school, and he said he had no idea.  He wasn't sure if his grades would be good enough to get in, and he had no idea how he would pay for it anyway.  He had been living at the Kabanga Protectorate Center for a couple of years, and was ready to move on, but had no plans.

When our team arrived in July, he was still there, and still friendly.  He helped us paint blackboards, hang artwork, and work with the little kids.  As with so many of the other kids at Kabanga, I didn't know how to say goodbye to him.  I've thought about him over the last year, and was hoping to get an update on how he was doing.

I am so happy to report that he is one of the highest performing students at Bishop Mpango Secondary School, and was just elected Chairperson of the newly-formed Kibondo Tanzania Albino Society! Asrafil was brought back to Kibondo because his family was there, and he found a spot at Bishop Mpango.  His studies are going very well, and he is a leader in his community, and an excellent role model.

One of our goals for the AM 2013 trip was to start new TAS chapters in rural outposts, and the people with albinism in Kibondo elected Asrafil to represent them.  Our team provided the newest TAS Chairperson with a cell phone and a resource book full of educational information in English and Swahili, and organized a planning meeting to outline some ideas for the next year.

Asrafil is doing an amazing job, and we hope he continues to be an inspiration to those around him.  Now, in a shameless plea for help, we are looking for people to help us sponsor his education through to completion.  We don't want Asrafil and his family to stress about whether or not they can provide tuition money, or if the school is going to just float him.  We want him to know that as long as he is doing well in school, we will provide for his tuition and fees. Tuition and fees at Bishop Mpango total $500 a year, which is less that $10 a week.  If you would like to help us provide for Asrafil's education, please visit our website, or email me at Susan@Asante-Mariamu.org.  Asante sana!

Albinism awareness event in Tanzania: both a hidden child and a witch doctor attend

News from Doug has been sporadic, but our partners on the ground have been filling us in on the trip so far.  One of the most meaningful things to come out of our first awareness event in Kibondo was that a father who has been hiding his son since his birth finally felt safe enough to bring him out in public.  The boy is 3 years old, and has never been into the village.  The dad learned about albinism, and how to care for his son; and the little boy received his first hat, sunscreen and pair of sunglassses.

Doug met another father who has been hiding is 30 year-old daughter for 6 years - from when the killings began.  He does not think it is safe to bring his daughter out in public yet, but was encouraged by the event.

It was unsettling to learn afterwards that a witch doctor was in attendance - and had been invited.  However, one of the realities we accept is that witch doctors are integral to Tanzanian society, and we are better off educating them than fearing or shunning them.  When I asked if the witch doctor's opinion about albinism had changed, I was told that it had, and that he feels differently now.  Apparently, he even suggested that we invite all of the witch doctors in the region to the event in 2014.

I'm not sure about going that far, but I think we are taking steps in the right direction.

Our event was attended by almost 600 people, including numerous local dignitaries and journalists. The ability to spread awareness about albinism to so many people far surpassed our expectations, and we are indebted to Reverend Bartholomew Segu for organizing the event.   However, the most significant impact of our time in Kibondo will always be that a 3 year old child went to his village for the first time.

An Abundance of Supplies and Karma

I thought I would have some time to unwind and relax after sending Doug off to Tanzania, but nothing could be further than the truth.  It's been a bit of a crazy week, but I am grateful for the abundance of supplies and opportunities:

We packed and repacked for days; and in the end, Doug and our team took 350 pairs of sunglasses, 280 low-vision devices, 280 Asante-orange hats, thousands of posters and pamphlets, 4 resource books to help new albinism advocacy groups — and lots of good wishes.

Two days later, we had a fantastic last minute opportunity to ship supplies to Kenya with friends who are moving there for a new job.  Thanks to Michelle and Chris, we were able to send 500 pairs of sunglasses, 280 long-sleeve shirts; and hundreds of low-vision devices, including 312 hand-held magnifiers, 20 monoculars, 160 cylinder magnifiers, 43 large magnifiers and 23 stand magnifiers.  I can't imagine how many single suitcases it would have taken us to get all of that material to East Africa!

Also, we were able to meet Tara Sullivan, author of Golden Boy - a new coming-of-age novel about a 13 year old boy with albinism in Tanzania.  Tara is appearing at One More Page Books in Arlington on Tuesday, and we were lucky to get to pepper her with questions and get a preview of her presentation.  Please come if you are able, or order her book from OMP.  It's a great story.

To end the week, I had a meeting with Arlington Academy of Hope, an NGO that works in Uganda.  We were discussing the huge success of our Rafiki Pack program, and ways to expand it. They invited us to travel with them to Uganda to develop an albinism awareness program there!

And finally, bringing it all full circle, I received an email from Mariamu.  She is doing well, and is so excited that our work is continuing in her name.  Telling her about what Doug is working on this week in Tanzania, and how we are expanding into Kenya and Uganda was a powerful testament to her inspiration.  All in all, it's been a good week.  Stay tuned for updates from Doug, and thanks for the support.

The beginning of an adventure...

I have been trying to write the next trip update, but have been stymied on how to start.  Well, it just hit me.

I've been fortunate to talk to Doug several times via FaceTime, and he's had some unforgettable experiences already.  From having to convince the Customs Agent in Dar es Salaam that the Minister of Health did not need to personally certify that the 300 pairs of sunglasses he brought were safe to use as medical devices -- to being woken up at 3am by an elephant eating palm fruit outside of his tent -- it's already been an adventure.

Last night, he met with the leaders of the Tanzanian Albino Society and shared our new resource book for people with albinism, and agreed on ways to move forward in partnership.  He'll be traveling with others from TAS in the next two weeks in three different rural areas, leading awareness and advocacy events, and distributing all of the donated supplies to hundred of people with albinism.

I just received an email from our friend Reverend Bartholomew, and Doug and the team has arrived safely in Kibondo, and tomorrow is the first official event.  We are very excited and grateful for all the support we are receiving on the ground from our partners in Tanzania, and from our friends at home.  Asante sana!