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.

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!

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.

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.

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!

Yesterday was a special day for people with albinism in Tanzania, and it is likely that none of them know it.  No one in Tanzania has heard of Habo – but hopefully, that will soon change.  A new book debuted that sheds light on the myths that surround albinos in Tanzania, and the danger they live with every day.  Tara Sullivan is a first-time author, and with “Golden Boy,” she’s drawn a perceptive portrait of a young boy with albinism who struggles against poverty, prejudice and murderous intent to find his place in the world.  This book could bring a new awareness to the plight of people with albinism in Tanzania.

Albinos in Tanzania aren’t just shunned and discriminated against – they are hunted for their body parts to fuel a black market.  Witch doctors promote the myth that the hair, skin and limbs of people with albinism can be made into potions that bring wealth or luck.  As a result, over one hundred people with albinism have been murdered or mutilated in the last five years.  Asante Mariamu Foundation works to raise awareness about this issue, and help people with albinism in Tanzania

In “Golden Boy,” Habo lives in relative peace with his mother, sister and brother in a rural Tanzanian village, barely surviving as subsistence farmers.  When his family is forced to leave the security of his village, Habo is confronted with the ugly reality that face people with albinism all throughout Tanzania.  They are treated as curses, and viewed as a “walking paycheck” by many.  Habo realizes that he must leave the comparative security of his family to seek safety in a large city.  What happens is a coming-of-age story that weaves accepting albinism with growing up against the backdrop of gruesome myths that surround albinism in Tanzania.

The story is compelling because of the subject matter, but it is memorable because of Habo.  Like a lot of teens, he is a study in contrasts: proud, confused, afraid, brave, stubborn and perserverant – and it is gratifying to watch him take the journey into adulthood.  People with albinism in Tanzania deserve the same chance to seek peace and fulfillment, and this book might be a step in that direction by raising awareness.
Check out this review in the Wall Street Journal: http://tinyurl.com/ouksutf

Mariamu Staford, who serves as our inspiration, graduated from a three-year vocational training program last weekend.

I am not sure why it is still so hard to write about our trip to Kabanga – even months after returning home.  Looking through the pictures of the kids we worked with makes me realize that we have to tell their stories, even though it is hard.

We prepared ourselves as much as possible for what we would find at Kabanga, but there was no way to fully understand life in the compound until we were there.  The high brick wall that encircles the space – topped with bits of jagged glass – became an obvious and painful symbol of the isolation of people with albinism within Tanzania.  Guards with machine guns patrolled the perimeter after dark, and the local villagers were reluctant to enter the walls of the compound.

Even under these circumstances, there was still joy.  We met wonderful teachers, caring parents and very bright children.  I promise to try and do them justice in the coming weeks with pictures and stories.  To see some beautiful portraits of the people of Kabanga taken by our partner Jacquelyn Martin, take a look at this NPR story:

http://www.npr.org/blogs/pictureshow/2012/11/21/165652046/portraits-of-albinism-letting-an-inner-light-shine