By: Pooja Rambaran
Since being founded in 2019, Precious Angels Charity has been making strides to raise awareness about the rare genetic neurological and developmental disorder, Rett Syndrome—one that its founder, Hadiyyah Mohamed’s niece has been diagnosed with for several years now.
In advancing this initiative, Mohamed is hoping to secure funds through her charity to complete the construction of a new clinic that aims to screen and treat patients.
Caused by a gene mutation on the X chromosome, the disorder mostly affects females and typically begins to display itself between six to 18 months after birth.
“Rett Syndrome affects nearly every aspect of an individual’s life–their ability to speak, walk, breathe and eat. It is marked by signs such as repetitive movements–the wringing of hands, muscle tones, scoliosis and seizures,” Mohamed explained to Guyana Times on Thursday.
Precious Angels Charity, Mohamed noted, is a non-profit and educational organisation that aims to raise awareness about this disorder, empowering persons to learn its common symptoms and seek treatment, if needed.
“We intend to provide assistance to those affected by Rett Syndrome as well as to raise funds that will go towards further development and improvement of research in hopes of one day obtaining a cure,” Mohamed related.
Her niece, Amani Mohamed—currently the only known case of Rett Syndrome in Guyana—was originally misdiagnosed with autism, another developmental condition that affects how people communicate, learn and behave.
“Commonly, Rett Syndrome can be misdiagnosed as autism so one in 88 persons are affected by autism but one in 10,000 is affected by Rett Syndrome. That goes to show how rare it is and there isn’t a lot of research done. It’s not widely known about or talked about. People don’t know what are the signs, how to handle this,” said Khadija Narine, the Charity’s Head of the Volunteer Committee.
Amani, who started showing signs of the disorder around two years old, was taken to Trinidad and Tobago where she was finally diagnosed with Rett Syndrome and where she continues to travel to get annual check-ups.
“I was inspired by her to create this organisation. It’s one that’s close to my heart,” Mohamed said.
Given the lack of knowledge surrounding the disorder, Precious Angels Charity is moving to construct a clinic along Lamaha Street, Georgetown to attend to potential patients in the near future.
“There is no clinic right now [in Guyana] where a child can go and have a screening or proper diagnosis of genetic testing. From the time I launched the organisation, I intended to build a clinic where we can have these services in place,” Mohamed said.
“One individual with Rett Syndrome would require a lot of care and attention that not every special-needs school or every clinic in Guyana can offer. There are also costs you have to bear in mind for a specific medication,” she added.
As such, the aim of the clinic is to offer the medication and requisite therapy services in the country.
“We’re hoping to have medications so families of persons with Rett Syndrome can purchase them here instead of purchasing them in another country or visiting another country for testing to be done because you do need yearly check-ups. Not everyone can afford that so we’re trying to bring those services to Guyana,” Mohamed said.
Mohamed explained her plans to work with local paediatrician Dr Mallika Mootoo, who has been aiding Amani and her family over the years, to procure these necessary medications.
Since most persons with Rett Syndrome lose their ability to speak and properly move, she added that the new clinic will also seek to provide speech, behavioural and occupational therapy.
Coinciding with Rett Syndrome Awareness Month, the team will be hosting a walk and barbeque on October 29 not just to continue raising awareness but also to raise funds for this clinic.
While the goal is to complete the clinic by next year, this is dependent on how many donations the Charity receives and how much funds they raise through this upcoming effort.
“You register at Muslim Youth Organisation (MYO) and then we leave as a group, walk down Woolford Avenue, along Lamaha Street, then into Camp Street and back to MYO,” Mohamed explained.
“It’s very short, very quick. You come back, buy your barbeque and then you gather around for a short seminar where you learn more about Rett Syndrome, updates and trials, and our organisation as well,” Mohamed said.
Tickets for the barbeque is priced at $2000 and can be purchased at Mohamed’s Enterprise, Lombard Street, Georgetown or Hadi’s World at City Mall. The team will also be selling shirts, purple – the colour designated for Rett Syndrome, at $2500.
Since 2019, the NGO has hosted a walk yearly which would attract between 800-1000 persons but Mohamed’s expectation is to see more people attending this year.
Mohamed and Narine encouraged persons interested in volunteering and those looking to learn more about the Syndrome, to seek information on their website https://preciousangelscharity.com/ , Facebook and Instagram.
