Seventeen-year-old Hadiyyah Mohamed is passionate about creating awareness for Rett syndrome so the lives of those suffering would be a lot easier, and has organized a walk and a packed day of activities on Sunday October 13.
Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. It causes a progressive loss of motor skills and speech
She has also established a foundation; Special Angels’ Charity, which would be launched on the same day, to provide funding for underprivileged patients.
Participants will assemble at the Everest Cricket Club (ECC) ground on Carifesta Avenue from 10:30 am before commencing the walk through Camp Street and Middle Street They will return to the ECC for an informative and interactive presentation on the disease and a live concert.
The event continues with a fun-fest where the children would be treated to a wide variety of games and activities, including the trampoline, bouncy castle, fun competitions and a spooky haunted house. There would also be a variety of food and drinks.
Mohamed’s inspiration to become proactive came from her six-year-old niece, Amani Mohamed who was diagnosed with the disease.
Like other children with the disorder, Amani was “quite normal” in the beginning and was “very chubby.” She also made eye contact and started saying a few words.
But at age two, all this changed. She lost weight rapidly, lost her hand movements and would wring the front of her clothes. She had stopped walking as well and stopped making eye contact. She had to be taken to the dentist because she had damaged her teeth through severe grinding.
She was unable to eat because of the loss of muscle tone and had also developed problems with her bowels.
Mohamed said her niece was having a lot of silent seizures and it was “very scary.” Thankfully they have “eased up now…”
At first she was diagnosed with autism but after the doctor realized that there was something more, he sent them to Trinidad for testing. After the diagnosis, Mohamed recalled, “It was a very devastating day for us.”
It was a relief that she was finally diagnosed though because according to Mohamed: “We didn’t know when she was hurting what was hurting her and what was happening to her.”
Amani started treatment and therapy thereafter and over time has regained the ability to walk and make eye contact.
According to the Mayo Clinic, Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive loss of motor skills and speech.
The Mayo Clinic report states too that this disorder primarily affects girls. Most babies seem to develop normally for the first 6 to 18 months of age and then lose skills they previously had.
Mohamed, a sixth form student of School of the Nations, told Stabroek News that the objective of her effort is to let the public recognize the symptoms of the disorder and to help with the “development of healthcare institutions and schools so that they would accept these children for who they are.”
Mohamed has enhanced her knowledge about the disorder through constant research. In fact it was while researching that she found out that October is Rett syndrome awareness month and was inspired to start the campaign.
Her drive to help also came after learning that other children are suspected of having the disorder but their parents cannot afford the diagnosis and may never be able to find out for sure.
Guyana is not equipped with the facilities to diagnose Rett syndrome. As such, samples would either be sent overseas or patients go to have the test done.
Tickets for the walk cost $500 for adults and $300 for children while specially designed purple or white t-shirt are on sale for $2000.
The proceeds or “generous donations” collected would be presented to “a few special schools and healthcare institutions for their further development and to purchase equipment and train personnel.”
Mohamed has received a lot of support from family and friends for her effort and has gotten sponsorship from her father’s business; Mohamed’s Enterprise and General Marine Company while she benefited from a huge deduction from ECC to host the event.
She has also collaborated with special schools, including Ptolemy Reid Rehabilitation Centre as well as Amani’s school; Met Pride Academy for the event.
She urged everyone to come out and support the good cause and purchase the t-shirts, noting: “Giving is not just about making a donation, it is about making a difference.”
