In observance of Rett Syndrome month – a neurological genetic disorder – Precious Angels Charity, a non-profit organisation (NGO), on Sunday hosted its 5th annual awareness walk which saw scores of people participating.
As usual, the walk started at the Muslim Youth Organisation (MYO) Ground and made its way to Lamaha Street then onto Vlissengen Road, back into Lamaha Street, and back to the starting point for a brief programme.
The Rett Syndrome walk on Sunday
During the short programme, persons who gathered were educated on the disorder through a video presentation and more so, a message from the founder of the NGO, Hadiyyah Mohamed whose niece – Amani Mohamed is affected by the disorder.
In addition, Amani’s sisters, Azzahrah and Arya recited a poem, and the key message was delivered by Dr Youni Abdul, who reiterated the call for more support for persons suffering from the disorder but more so, emphasised the importance of caring for them.
He added that there is definitely no cure for Rett Syndrome while adding that ongoing research is being done. This disease, he reiterated, affects almost every system in the body, leading to seizures, loss of speech, loss of motor skills, diminished eye contact, breathing problems, wringing and washing of the hands, and scoliosis.
“What we do is support the children by giving them systematic support… if they have problems with speech, they will need speech therapy, if they have problems with their balance, they need physiotherapy, occupational therapy and just trying to engage the family and the people in this field to help the children with Rett,” Dr Abdul stated.
However, a member of Precious Angels, Khadija Narine, thanked those who turned out in their numbers to support the walk and fundraiser. She added that the NGO has been raising funds to construct a clinic to attend to persons diagnosed with Rett Syndrome.
“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.”
As such, all the funds raised on Sunday and the donations received will go towards that venture.
In fact, in a recent interview with the founder, she stated “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.”
“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.
Meanwhile, the Chairperson for the event, Hana Mohamed also took the opportunity to express deepest gratitude to those who attended and contributed to the initiative.
“It has been five amazing and successful years and you can agree with me when I say the future is definitely promising. I must compliment both Precious Angels Charity and Mohamed’s Enterprise for their outstanding fundraising campaigns which many institutions are involved and stand to benefit from.”
She added that behind it all is Amani Mohamed, who is loved by many. “Purple for Amani was chosen to be the slogan because she is a fighter. She is stronger than you and I. She is supported and loved by many and God made sure of that. Looking at this crowd here today, we are beyond happy and proud and we express our deepest gratitude. Her family is most appreciated by it all.”
Precious Angel Charity channels its passion by aiming to achieve certain objectives but these can only be achieved with the help of public support and donations.
Precious Angel Charity channels its passion by aiming to achieve certain objectives that can be only achieved with the help of public support and donations.
