Precious Angels to host 4th annual Rett Syndrome Awareness Walk on Sunday

In an effort to raise awareness of this rare neurological genetic disorder, the non-profit organisation (NGO) Precious Angels will be hosting its 4th annual Rett Syndrome Awareness Walk on Sunday, October 30, 2022.

One of the walks held by Precious Angels in the past

Establishment of the Precious Angels organisation has been inspired by Hadiyyah Mohamed, whose niece was diagnosed with the disorder. However, October is Rett Syndrome Awareness Month, and Precious Angels will be hosting the awareness campaign at the premises of the Muslim Youth Organization (MYO) on Woolford Avenue in Georgetown.
The campaign will take the form of a walk and food sale to raise funds to assist those so affected, and there are hopes of obtaining a cure. Registration and warm-up exercises will be done at 8:00h, and the walk commences at 8:30h. Participants are requested to assemble at the MYO 10 minutes before the walk commences.
The walk will move in an easterly direction on Woodford Avenue, and will pass through several streets before returning to the starting point for culmination.
Bar-B-Que tickets are on sale at a cost of $1200, and those desirous of purchasing a T-shirt to participate in the walk are kindly asked to pay $2000. These are available at Mohamed’s Enterprise on Lombard Street, Georgetown, and at Nadia’s Avon in City Mall.
This walk is an annual initiative to raise funds towards further research on this disorder and for the construction of the very first Rett Syndrome Clinic and Institution in Guyana, which will care for, diagnose, and screen persons affected by Rett Syndrome.
Precious Angels is urging anyone who has a relative or loved one who is experiencing peculiar signs and symptoms to contact the organisation. “Although diagnosis and full treatment are not quite present in Guyana for suspected cases of Rett Syndrome, it is definitely on our agenda. One can only hope for a cure to be found in the near future,” the NGO has said.
Meanwhile, statistics have shown that one billion people worldwide experience some form of disability. Rett Syndrome is a very rare neurological disorder that affects brain development and functionality. It affects about 1 in 10,000 girls, but is hardly found in males.
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. Some symptoms include seizures, loss of speech, loss of motor skills, diminished eye contact, breathing problems, wringing and washing of the hands, and scoliosis.
Although there’s no cure for Rett Syndrome, potential treatments are being studied. Doctors can easily 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 healthcare institutions.
As a result, Precious Angels has been inspired and motivated to initiate an awareness campaign. Anyone who wishes to contribute to the organisation is asked to do so at Mohamed’s Enterprise.
Back in 2019, Mohamed donated $2 million to several special needs schools.