Now aged 14, Sasha Bharrat will finally have the opportunity to attend school as she is receiving treatment for a skin condition, which for years barred her from attended classes; the young teenager says she is anxiously awaiting that opportunity as she hungers to learn.
While Sasha’s parents home-schooled her to the best of their ability and she had some lessons on the internet, the young girl said that every morning she would look longingly at the passing children dressed in uniforms and wish for the day when she would be one of them. While she is anxious, Sasha said she is also scared to attend school but she hopes to one day become a doctor as she wants to help children. If that does not materialize, she has a back-up plan, just to “be there” for children in need.
A recent camp experience in the United States and ongoing treatment will now allow her to attend normal school. She is expected to be enrolled in Professional Education, a private institution in Mon Repos which has already agreed to accept her.
Sasha, who celebrated her 14th birthday yesterday, has the condition Autosomal Recessive Congenital Ichthyosis (ARCI) Lamellar Ichthyosis, which occurs in approximately 1 in 300,000 births. Recessive genes, similar to those that result in persons having blue eyes, cause lamellar ichthyosis. The genetic abnormalities result in the shedding of skin and according to information obtained online it occurs when both of 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 soles is affected.
Sasha’s journey to the US was facilitated through Caribbean American Domestic Violence Awareness’ (CADVA) founder Dianne Madray. The August 2017 Camp Victory provided activities for approximately 78 children with various skin disorders.
“When I was not going to school, it made me so sad because in the morning I will get out of bed and go outside and see kids passing by to go to school. This made me very, very, very mad just to know that I could not attend school due to my skin,” Sasha told the Sunday Stabroek in an email interview from the US recently.
When she starts school, it will not be her first attempt. When this newspaper had interviewed her four years ago, she had described how devastating it had been for her and her parents when they first tried to send her to school.
Not only did she face cruel taunts from her peers on the few days she attended school, but her parents had to deal with the objections of other parents who felt the condition was contagious. And because the condition worsens when the individual is in the sun or the temperature is high, there were many days when the child cried out in pain after a few hours at school. As a consequence, she was taken out of school.
“Is everybody we turn to. We went to the ministry in Georgetown, they send we back to the education office in BV nothing… We ask if is even three hours a week somebody could come and teach she, but still nothing…,” her frustrated father Ganga Bharrat had told the Sunday Stabroek four years ago.
Speaking about her experience in the US, Sasha said it was “amazing” with the most important experience at Camp Victory (the camp she attended) being meeting children with the same skin disorder.
“It made me feel more comfortable,” she said in the interview even as she expressed that she is happy about returning home as she misses her parents and younger brother Josh.
She also shared that the camp taught her to appreciate herself and that her favourite activities at the camp were archery, fishing, arts and craft and making new friends. She hopes to return to the camp next year and in years to come, as she hopes to first be a junior counsellor at age 16 and after the age of 18 a full-fledged counsellor.
Six years ago
Meantime, Madray told the Sunday Stabroek that she met Sasha six years ago and since then, she had wanted to assist her as she loved the child’s passionate personality. According to her, Sasha “is one of the most loving children I have ever encountered.” Madray remained in touch with Sasha’s parents.
But it was only last year that the activist had a firsthand experience as to how difficult the skin condition was for the child when she had her stay over at her home twice.
“The skin was shedding severely and at times it would bleed under the cracked skin,” Madray shared adding that managing the experience was difficult without the right treatment, medications and or ointments. She had previously sourced a cream called CeraVe, which was donated by a company called Valeant and was shipped to Guyana for Sasha. But it was not successful.
Having had the firsthand experience, Madray said, she returned to the US and following some research she discovered an organisation called FIRST- Foundation for Ichthyosis and Related Skin Types.
“I felt like I was in Ichthyosis heaven and the resources were at my fingertips,” she said revealing that the organisation was “a great source of information and led me to another search full of resources.”
It was this search that led her to a special camp for children with skin disorders. She contacted Dr Howard Pride, who started the camp and schedules it annually with a full team planning fun activities for these special children.
Madray advocated for Sasha’s participation in the camp in one phone conversation and this led to the approval of Dr Pride who referred Sasha to the American Academy of Dermatology (AAD) which supported the application to invite Sasha to the camp for August 2017.
“Communication with AAD and Dr Pride took only three days for the approval to arrive in my inbox. The coordination of this service could not have been possible without Dr Howard Pride, who is also the Chairman of Dermatology at Geisinger Medical Center in Pennsylvania, USA and Janine Mueller, Program Specialist at the American Academy of Dermatology in Schaumburg, Illinois, USA. We cannot forget FIRST for having the resources online for me to find,” Madray told this newspaper in an interview.
Madray is now a registered member of FIRST and receives all the educational resources to follow up on for Sasha’s skin care. This is shared with Sasha’s parents so they can be educated as well.
While in the USA, Sasha learned how to manage and care for her skin and hair on a daily basis with a daily routine of using the Dead Sea Salt Bath that was recommended by the camp. The bath has to be used as regularly as possible as whenever she does not have the bath her skin gets very dry.
It is very expensive, and Madray pointed out that Sasha will need to use it in Guyana to maintain what was done in the US; she is also using a special Tea Tree hair shampoo and skin products.
“These products are very costly and not available in Guyana. Currently I am looking at ways to source these products or how we can get supplies donated to continue this care. I have some awesome friends and one friend, Devika Bhagwandas, shipped a 20lb bag of the Mineral Dead Sea Salt to Sasha,” Madray said.
The salt cost about US$41.79 (from Amazon.com) for a 20lb bag, whereas a 60lb bag is more cost-effective running about US$100 and saves about US$25.
Hesitant
Madray has been working with children and families in difficult circumstances for years and recently, she and others who work along with CADVA have placed emphasis on the children who are survivors of domestic violence. She has been taking some of them to the US, with the help of others, for some much needed assistance, but a recent incident made her hesitant and this also trickled down to Sasha as she was unsure whether she wanted to facilitate the trip initially.
Madray revealed that in December 2016 she arrived in the US with four children who are survivors of domestic violence, for a Bereavement Project and it was expected that they would have returned to Guyana earlier this year.
Unfortunately, two of the children absconded during the time the flight was delayed and Madray has since reported the incident to the Department of Homeland Security and the US Embassy in Guyana.
“It is now an unfortunate situation trusting families when sponsoring children and providing them with learning and growing opportunities to visit the USA on a visitor’s visa,” Madray said pointing out that the relatives of the two children had not followed through with the protocol they agreed to.
“This now makes it difficult to continue the domestic violence project bringing surviving children to the USA on sponsored visitor’s visas, especially due to the immigration laws under the new [US President Donald] Trump administration,” she pointed out adding that children of a mother in Linden who was killed were expected to travel in August 2017, but could not and will not be able to until the absconded children return.
On the brighter side, Sasha plans to start her own channel on YouTube called “Sasha’s Life”.
“Look for my upcoming YouTube channel launching in October. I will talk about my skin and other subjects,” she happily announced.
