In a testament to their name, the Miracle Kids Stimulation Centre has continued to serve the northern areas with specialised care for some of the community’s most at risk special needs youth.
Among those in their care is 12-year-old Tiante Scott who has been battling Rett Syndrome, a rare genetic neurodevelopmental disorder that primarily affects girls.
The syndrome causes a severe progressive loss of motor skills, speech and purposeful hand function after a period of normal early development.
Tiante’s grandmother, Marlene, said they felt sad when she developed the symptoms and was positively diagnosed with the disease at just one-year-old.
“In the beginning, her mother could not accept it and was in denial,” she said.
“Tiante was the first child at Dora Nginza Hospital to be diagnosed with Rett Syndrome.
“To date, five girls who were born there have contracted the illness.”
Marlene said Tiante was a lovable, fun-loving child and, through the help of the centre, she was able to express and develop despite the disease.
“We are so grateful that she can go to school at Miracle Kids Stimulation Centre in Chatty,” she said. “She has been there since the age of four.
“There is remarkable improvement in her whole being since she began attending the centre.
“A lot of therapists work with her at the school and she loves and respects being there very much.
“She definitely appreciates the quietness and love there.“
Rett Syndrome is caused by a mutation in the MECP2 gene and it often includes repetitive hand movements (wringing and washing) and breathing difficulties.
Children who acquire the illness normally lose previously learnt skills and speech is significantly affected.
Rett Syndrome generally progresses through four stages, ranging from early stagnation to rapid regression, and finally a long-term stable period followed by a severely disabling phase.
While there is no cure, treatment focuses on managing symptoms through therapy, like Tiante receives at Miracle Kids.
Miracle Kids matron Genevieve Hendricks said they worked with learners with severe to profound intellectual disability (LSPID).
“Tiante falls in the profound category,” she said.
“She will not be able to go to school and will be in a care centre until the age of 18.
“Then she will have to be looked after by a carer at home.”
Marlene said they were waiting to hear from Red Cross Hospital in Cape Town for a date for Tiante to consult a spine specialist.
“She has been going to Red Cross Hospital every year since she was diagnosed with the illness.
“We fly to Cape Town and luckily the trip and accommodation are fully paid for. It is only the helper who goes with who we must pay.
“Being a senior citizen, I pray to God each day to spare my life so that I can be there for Tiante.
“Rett Syndrome children’s life expectancy is 20 years, but it all depends on the Lord.
“We will keep on loving her no matter what happens.”
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