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Raising Awareness for Rett Syndrome – A Mission of Hope and Compassion.

Oct 27, 2024 Letters

Dear Editor,

October is Rett Syndrome Awareness Month, a time dedicated to shedding light on a rare but life-altering disability that affects 1 in every 20,000 children, predominantly girls. This month holds deep personal meaning. It was my niece’s diagnosis with Rett Syndrome that inspired the creation of the Precious Angels Charity, a non-profit organization dedicated to raising awareness and funding research to one day find a cure. This journey is not just about my family—it’s about every family affected by this rare condition and ensuring no child in Guyana or anywhere else is left behind.

Rett syndrome is a neurological disorder that begins to show its effects in early childhood. Often, babies appear to develop normally in their first 6 to 18 months, but then they start to lose skills they had gained—such as speech, motor control, and the ability to use their hands purposefully. The condition is caused by mutations in the MECP2 gene, which is crucial for brain development. Symptoms range from severe cognitive impairment to problems with walking, talking, eating, and even breathing. Many children with Rett Syndrome experience seizures and severe gastrointestinal issues. The history of Rett Syndrome dates back to its identification in 1966 by Austrian paediatrician Dr. Andreas Rett, though it took until the 1980s for it to be recognized as a distinct disorder. Since then, research has made strides in understanding the genetic mutations behind the syndrome, but as of now, there is still no cure. The severity and complexity of Rett Syndrome demand not only medical intervention but also compassion and awareness from the broader community.

It is critical that people educate themselves about rare disabilities like Rett Syndrome. Early diagnosis can make a significant difference in the quality of life for both the child and their family. By learning the signs—loss of motor skills, slowed growth, breathing difficulties, and repetitive hand movements like wringing or clapping—we can better support early intervention efforts.

In Guyana, Rett Syndrome is likely affecting more than just a single family and our underdeveloped healthcare facilities are not remotely able to assess, diagnose and treat these individuals. It is essential to understand that while the condition is rare, it is present here. Our charity, Precious Angels, is committed to making sure that any family suspecting their child might be showing signs of this condition has a resource to turn to. If you see symptoms that concern you, I urge you to contact us at www.preciousangelscharity.com or reach out on social media at @preciousangelscharity19, or find us on Facebook at Precious Angels Charity.

Raising awareness is not just about understanding the facts—it is about building a community of empathy, one that understands that the challenges faced by these children and their families are immense. It is about rallying together to fund research for a cure and ensuring that no parent feels alone when faced with the overwhelming realities of caring for a child with a disability like Rett syndrome.

At Precious Angels Charity, our mission goes beyond awareness. We are working tirelessly to raise funds that go directly toward research aimed at finding a cure. We believe that the world can change for the better when we come together, and every small effort matters.

October is Rett Syndrome Awareness Month, and it is my hope that as more people learn about this disability, we can work together to create a brighter, more hopeful future for children like my niece. With increased awareness comes greater support for research and advocacy—steps that will bring us closer to the day when Rett Syndrome is no longer a source of suffering for any family.

Wear purple, donate, if possible, share and engage with our content. Let’s take this month to educate, to empathize, and to act. The children fighting this battle deserve nothing less.

Yours respectfully,
Hadiyyah Mohamed
Founder
Precious Angels Charity

 

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