Precious Angels awareness walk: Children born with Rett Syndrome need a lot of support – Dr Mootoo

…says there is no cure for disorder but there is continuous research

In an effort to raise awareness of Rett Syndrome – a neurological genetic disorder – Precious Angels, a non-profit organisation on Sunday hosted its 4th annual awareness walk which saw scores of people from all walks of life participating.

The walk started at the Muslim Youth Organisation (MYO) Ground and made its way to Lamaha Street then onto Vlissengen Road and into Thomas Lands and back to the starting point for a brief programme.
During the programme, Dr Mallika Mootoo, a private paediatrician, stated that children who were diagnosed with Rett Syndrome need a lot of support.
“There is no cure for Rett Syndrome but there is a lot of research that is going on at the moment. The future, however, does look hopeful for Rett but in the meantime 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 psychotherapy, occupational therapy and just trying to engage the family and the people in this field to help the children with Rett.”
She further stated that it is their goal to enable each child who was diagnosed with the disease to live to their fullest potential.

In addition, she noted that due to the many symptoms associated with the disease, it tends to overlap other illnesses.
“Many times, children are diagnosed late with Rett Syndrome. One of the things we are trying to do here is to raise awareness of Rett Syndrome so that if people see certain symptoms, it may be Rett and may not be only autism.”
Dr Mootoo stated that the disease 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.

However, the youngest daughter of businessman and philanthropist, Azruddin Mohamed is the first case of Rett Syndrome in Guyana. Amani’s sister, Arya Mohamed, explained that this is the 4th Awareness Walk that was organised to educate parents about the symptoms of the disease.
She nevertheless thanked those who took time out from their busy Sunday to join her family and more so Precious Angels in the awareness walk.
We really want to say thank you to all who have come out to walk with us… we appreciate your support that is being shown toward children who suffer from Rett Syndrome,” the young Mohamed added.
Meanwhile, Sharmaine Ranjee, the therapist who takes care of Amani, explained that is always fun to attend to her, adding that she is unique in her own way and she is blessed – blessed to be in the family she is in because she is being provided with the most optimal care that a child with Rett Syndrome would need.
She too stated that children with this disorder have to be treated and supported to the fullest and more importantly, feel included.
Presently, there are about five occupational therapists, six speech therapists along with trained rehab practitioners to assist children with such diseases. These services are also accessible throughout the country.
Statistics have shown that one billion people worldwide experience some form of disability. Rett Syndrome affects about 1 in 10,000 girls, but is hardly found in boys.
Doctors can easily diagnose Rett by observing signs and symptoms at every stage of growth and development.