Dear Editor,
Statistics from the World Bank Group show that one billion people experience some form of disability. Rett syndrome is a very rare neurological disorder that affects brain development and functionality. More than 6,500 girls are born with Rett syndrome each year.
That means that more than 17 girls are born with Rett syndrome every single day.
Rett syndrome is genetically caused by a mutation in a gene located on the X chromosome. Babies with Rett syndrome are born after a normal pregnancy and delivery. Most infants with Rett syndrome seem to grow and behave ordinarily for the first six months. However, signs and symptoms start to appear thereafter. These symptoms are: seizures, loss of speech, loss of motor skills, diminishing eye contact, breathing problems, wringing and washing of hands, and scoliosis.
For better understanding, the symptoms of Rett syndrome are a combination of autism, cerebral palsy, Parkinson’s, epilepsy, and a variety of anxiety disorders.
Although there’s no cure for Rett syndrome, potential treatments are being studied. Doctors can diagnose Rett by observing signs and symptoms at every stage of growth and development. However, this is not possible in Guyana, due to the lack of trained personnel and equipment in the health care institutions, as well as the rarity of this disorder, as it can often be misdiagnosed as autism.
As a result, we were inspired and motivated to initiate an awareness campaign and non-profit organization – Precious Angels Charity – in an effort to spread awareness and raise funds for the treatment of those who are silenced by this disorder. The founder of this organization, Hadiyyah Mohamed, initiated this organization after being inspired by her niece, who was diagnosed with Rett syndrome.
If anyone has a relative or loved one experiencing peculiar signs and symptoms, be aware that help can be provided. Please reach out to us on our social media platforms, which you can find on our website: www.preciousangels.com. Although diagnosis and full treatment are not quite present in Guyana for suspected cases of Rett syndrome, it is definitely on our agenda.
Precious Angels Charity is 100% non-profit, and our aims surround raising funds that would go towards research to develop a cure and to aid those affected by this disability. However, we cannot achieve our goals without your help. We plead with you all to look at the greater cause and donate to the angels affected by Rett.
We host yearly fundraisers to raise money which would go towards further research, and construction of the very first Rett syndrome clinic and institution here in Guyana, to care for, diagnose, and screen Rett individuals.
October is Rett syndrome Awareness Month and purple is the colour. On Sunday, October 29, we will be having our 5th Annual Awareness Campaign at MYO, Woolford Avenue, with an Awareness Walk and BBQ sale afterwards.
Come out and show your support for a worthy cause. Tickets are on sale for $2000 and T-shirts for $2500 at Mohamed’s Enterprise, 29 Lombard Street, and at Nadia’s Avon in Hadi’s World Inc (City Mall). Registration and warm-ups will be done at 9:00h, and the Walk will begin immediately after.
A programme to teach more about this disorder would follow after. And finally, the BBQ and food sale will begin at around 10:00h.
Tell a friend to tell a friend, purchase your tickets and T-shirts, and join us in our fight to defeat Rett.
Yours respectfully,
Hadiyyah Mohamed
Founder
Precious Angels
Charity
