On Having Albinism...

When I first decided to travel to Uganda I started looking at all the SNH children in need of sponsors. I wanted to know what the children, parents and SNH staff viewed as the priority need(s) for each child. I read their profiles and started thinking about their challenges. I thought about how those needs would be addressed if the children attended the neighborhood school in my home town and how they might be addressed in rural Uganda.

Many of SNH’s children do not attend school and most of those that do perform significantly below their same age non-disabled peers. In general, the village schools are overcrowded and ill equipped and teachers do not have the training or resources to meet the needs of individuals who learn differently.

With so many obstacles and too few resources how can SNH help and how can we friends of SNH assist? This post is the first in a series about the children of SNH, their challenges and how working together we can help each child transform their disabilities into abilities

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Meet Rebecca!

Rebecca is an awesome little girl who hopes to beat the odds, she has two loving parents and the support provided by Sherinah’s New Hope. Rebecca is one of the lucky ones because she also has a sponsor. Because of SNH Rebecca attends school, where her performance is average. At school she not only receives an education but also school lunch and is receiving coaching/tutoring to enable her to keep up with her peers. Like all the other little girls in her village she laughs and plays and has dreams for the future. Her favorite subject is math and she’d like to be a doctor when she grows up.

Rebecca’s challenge is albinism

“The word “albinism” refers to a group of inherited conditions. People with albinism have little or no pigment in their eyes, skin, or hair. They have inherited altered genes that do not make the usual amounts of a pigment called melanin. Albinism affects people from all races. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds”. (The National Organization for Albinism and Hypopigmentation [NOAH])

“In Africa, albinism is much more common, and approximately 1 out of every 8 persons carries the gene. This results in an occurrence rate of 1 out of every 2,000 people." (Asante Mariamu)

There are several aspects pertaining to albinism that need to be addressed if Rebecca is to grow up happy and healthy. The first are physical. Persons with albinism have varying degrees of visual difficulties that need to be considered. Their eyes are particularly sensitive to sunlight and need to be protected. Because of SNH Rebecca was seen by a Dr. and fitted with glasses, she was provided with an umbrella, sun glasses and hats with brims/visors to wear to shield her eyes.

The second physical condition people with albinism need to be concerned with is skin care. Failure to protect their skin from the harsh rays of the sun can result in debilitating skin cancer. Rebecca receives skin care products (skin cream and lip balm) through SNH. She and her mother received education in the proper use of the products and the importance of taking care of her skin. In addition, Rebecca has received various UV protective and long sleeve clothing items that help keep her covered up

“People with albinism are at risk of isolation because the condition is often misunderstood. Social stigmatization can occur, especially within communities of color, where the race or paternity of a person with albinism may be questioned.” (NOAH)

“In many parts of East Africa, people with albinism are routinely shunned by their communities and excluded from society. They are denied education and lack even a basic understanding of albinism…” (Asante Mariamu)

Rebecca is smart and inquisitive and is already asking questions about her condition, questions even her parents have had trouble answering. SNH is working with Rebecca and her family to help them understand what albinism is and is not and to help Rebecca develop a strong sense of self. On a recent visit Rebecca’s sponsor presented her with a copy of the book My Fair Child.

“A Child born with albinism hears her mother lovingly speak the words, "Mirror, mirror reflecting from the wall, I am seeing the fairest child of all. Smiling warmly like the rays of the sun, you bring much happiness to everyone." The child falls asleep feeling a true sense of security. She dreams of magnificent pale creatures like herself and contentedly sees herself playing amongst her fair-haired friends. The reader feels her child-like innocence as she is later approached by a bully. She appears fearful but not defeated. There is no tolerance for this inappropriate behavior as "The creatures form a circle to protect these fair children from any disrespect." She awakens and shares her dream with her mother and is compassionately reminded of her unique beauty. "Be proud of who you are, let your love shine and hold your head up high fair child of mine." (Amazon)

Rebecca is a “fair child” whose quality of life is greatly enhanced by being a part of SNH. Please consider becoming part of the SNH team by giving another child the gift of sponsorship. Profiles of waiting children can be viewed here.

For more information on albinism visit the Asante Mariamu webpage and the The National Organization for Albinism and Hypopigmentation site.

About Holly Caulfield…Holly is a long time special education teacher, has been a child sponsor for most of her life and has helped run nonprofits/child sponsorship programs for over ten years. In addition to enjoying traveling, meeting new people and learning about other cultures, Holly enjoys reading, writing and spending time with friends.