Recently the Sunday Stabroek featured the story of a brave ten-year-old who has a rare skin condition which speeds her skin cell turnover, causing the top layer to shed six times faster than in a normal person, and whose only wish is to get an education. Since that publication Sasha has received help from public spirited citizens and the government, and she is now being home schooled, which was her biggest wish as her condition prevents her from attending school.
Today in her own words Sasha says thanks, and talks about why she likes the Christmas holidays.
“My name is Sasha Davi Bharat. I would like to send special thanks to Ms Oluatoyin Alleyne of the Stabroek News for publishing my story, which has gotten the attention of the Guyana National Broad-casting Board Authority and members of the public. Thanks to Miss Bibi Shadick and her team who visited me and made promises which she has fulfilled by giving me a chance to continue my education at home.
“This has really changed my life and boosted my self-esteem, in that I now believe that I will become the medical doctor I always want to be. I dream of helping people and that is … my motto, and having this rare condition I am very grateful for this opportunity.
“I would like to say a special thanks to persons who are supporting me. Special thanks to my mom and dad who help in supporting me through the years. I like the Christmas holiday because I like to help my mom dress the Christmas tree and the house. I also love Christmas because I love how people would dress up their homes and always gaffing with you and in a good mood.
“Last September for my birthday was like Christmas because my mom cooked fried rice and I had gifts and it was a very enjoyable time. For this Christmas I would like to have a dolly house, with a dolly and clothes too.
“My Christmas holiday this year would be an enjoyable one since I am being taught how to use the computer and internet. So I will be able to make contact with my friends and relatives overseas.
“I would like to wish all Guyanese a Merry Christmas and a Happy New Year.” When this newspaper had featured Sasha she had said; “I want an education; I love Maths,” adding, “I would like to be a doctor so I can help people.” Sasha’s condition is known as lamellar ichthyosis and it affects just about one in 600,000 people worldwide. It is caused by a genetic abnormality and according to information obtained online it occurs when both a child’s parents carry a recessive gene; in such a case, there will be a one in four chance that their child will have the condition.
The skin usually appears to have large plate-like scales which often are rather dark or brownish in colour. The scaling often involves all of the skin although the face may show milder changes. The condition usually appears in the first few days after birth, lasts for life and can be very severe.
There are two variations of the condition; in one case only parts of the skin will be affected, while in the other every part of the body from head to sole is affected.
Unfortunately, in Sasha’s case her entire body is affected and since there is no cure the best that can be done is to apply creams that would result in less shedding of the skin. The condition is also better controlled in a cool climate than in a hot one.
The family had a second-hand air conditioning unit which was installed in Sasha’s room and which used to be turned on during extremely hot nights to help her sleep. The family could not afford to switch the unit on every night because of the huge electricity bill involved, and it was not turned on during the day.
However, Air Guyana is donating a new unit which is about to be installed, and arrangements have been made to pay the bill through the agency of Bibi Shadick. In addition, E-networks is giving Sasha one year’s access to the Internet free, while the Ministry of Education has provided her with the required school books.