The parents of Sasha Bharrat, the 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, said that they are heartened by the public response to the child’s plight and there have been promises of help.
Ganga Bharrat told the Sunday Stabroek that they have received quite a few calls from members of the public and some have promised to assist with the cream Sasha needs to control the condition, as well as with the monthly cost for connection to the internet.
This newspaper featured Sasha’s story in its edition last Sunday dealing with the difficulties the family experiences because of the condition, but most importantly, the child’s cry for an education. The child is unable to attend school not only because the parents of other children have been unkind to her and her peers have taunted her cruelly, but also because the condition worsens when she spends long periods in the heat.
The parents of the child are still hoping that she could be given a few hours of home schooling and is appealing to the Ministry of Education to assist. However, should they be able to afford the internet then the child could learn from the many programmes available.
The family has a laptop computer which they were forced to take on a hire purchase from a store, and they struggle every month to pay the monthly instalments. Bharrat had bemoaned the fact that they were denied a computer under the One Laptop Per Family programme, even though they were in dire need.
The family has since received a call from the programme office following the publication of the story and has been informed that a computer would be presented to Sasha tomorrow.
“I want an education, I love Maths,” the child said when asked, 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 has a second-hand air conditioning unit which is installed in Sasha’s room and which is turned on during extremely hot nights to help her sleep. The family cannot afford to turn the unit on every night because of the huge electricity bill involved, and it is not turned on during the day.
The parents said they would continue to fight for their child’s right to receive an education and they hope the relevant authorities would assist them.