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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

ARCI in Africa: Meet Dakura, Kweku and Amotalé

Dakura, Kweku and Amotale live in Jirapa, Ghana. Last month, a Ghana News article about them received a lot of publicity. Unfortunately, the headline of the article called them “alligator children” and concluded, “The children are seen as outcasts. People around perceive them as evil, but the mother is seeking help for her children.”

While the news article is vague about the “strange skin disease” afflicting these children, based on the pictures of the children and a description of their symptoms, it’s pretty clear to us that the children probably have a form of lamellar ichthyosis, a form of autosomal recessive congenital ichthyosis (ARCI), just like our friends Kyriaki and Jeff. But unlike our friends, these children don’t live in a developed country.

After seeing the Ghana News article, I found the Facebook page mentioned in the video and on Friday morning I interviewed a nurse from Colorado who is in Ghana right now, trying to help these children. In some ways, it is amazing how small our world has become — it was really easy for me to locate and chat with a lady in a dusty village in Africa. Yet at the same time, the world is so large and some problems are so great that I feel powerless, knowing that these kids have been living untreated for ten years or more.

The children live with their mother in northwestern Ghana,  a subsistence farming area in the middle of sub-Saharan savannah. Their father died several years ago, and others in their village believe them to be cursed and evil. The village residents have refused to give the family food and their mother is beaten regularly. They live, literally, under a tree.

In 2011, a local relief worker and minister, Faustina, began helping the family, buying food and doing what she could with meager funds. Late last year, Colorado nurse Michelle McGowan saw a short video Faustina made about the children, and Michelle was moved to help the family. Within a few days, she jumped on a plane to visit the children in Ghana.

According to Michelle, Dakura, age 15, is reasonably healthy. He spends a lot of his day pouring water on himself with a bowl and a bucket to stay hydrated. Michelle says that he is intelligent and inquisitive and happy.

copyright Michelle McGowan, 2014. used with permission

copyright Michelle McGowan, 2014. used with permission

Michelle says that Kweku, age 12, is almost completely blind from corneal damage caused by untreated ectropion. Ectropion is a fancy name for when the eyelids pull down and fail to close all the way, and it is a fairly common symptom of many ARCI types. Michelle told me that for all three of the children, the scale on their eyes is so thick that their eyes do not close at all, and that the dry air and hot sun caused Kweku’s corneal damage. Michelle feels that he has given up on life and that he doesn’t smile or laugh or cry because his spirit is broken.

copyright Michelle McGowan, 2014. Used with permission

copyright Michelle McGowan, 2014. Used with permission

The youngest child is Amotalé. Michelle told me that while Amotalé is 10 years old, she is only the size of a healthy 4-year-old. Her name means, “Has it gotten to this?”

She has scurvy from vitamin C deficiency and walks with a stick because her legs won’t straighten around the thick scales on her joints. She has severe malnutrition and her belly is distended. Her poor head is so thick with scale that it is like a cap. Michelle told me that two days ago, when she gave Amotalé a bath and removed some of the scale from her head, she saw the skin underneath was leaking pus and was infected. A separate Facebook post from the same day even says there were maggots underneath her scalp. Michelle said that Amotalé hated the bath, but once she was done with lotions, the little girl started dancing.

copyright Michelle McGowan, 2014. Used with permission.

copyright Michelle McGowan, 2014. Used with permission.

Michelle has encountered several problems in Ghana. Before she left America, Michele contacted Beiersdorf, who gave her three cases of Aquaphor for the children. However, Michelle says that Ghanian customs officials at the airport seized the Aquaphor and have not yet released it.

Things our own family enjoys here in the developed world, such as acid lotions and topical retinoids and even simple things like bathtubs and eye drops are expensive or even impossible to get in places like Ghana. At the village, Michelle has access to bleach, salt and shea butter (the region is actually known for producing refined shea butter!), but is working hard to find a barrel or something that can be used as a bathtub. She is trying to get the kids some medical treatment, and has just started a charity, The Children of Kuuncheni, to deal with local government requirements. Michelle says she is staying in Ghana until the middle of February. Before she leaves, she hopes to be able to relocate the family to the capital city, Accra, where they will have better access to things like running water. She is trying to raise money to support the move and cover costs in the city. Doctors Without Borders doesn’t work in the country, and even USAid appears to be focused on bigger-picture things like malaria and safe water supplies.

We’ve written before about other poor, isolated areas in Mexico, Malawi, and Indonesia. The plight of affected people, especially children,  and the difficulties that relief workers like Faustina and Michelle are having are a striking reminder to us that ichthyosis affects people around the world, regardless of race, religion or social status. It’s also a reminder to us and our family about how lucky we are to be born with access to creature comforts in a society that doesn’t see congenital birth defects as evil. Well, most of the time, right, Carly?

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