Despite rare condition, Tianté (2) is ray of sunshine

2016-05-11 06:00
Tianté Sacott (2) (right) with granny Marlene Scott and sister Jeanté (7). Photo: ZELDRÉ STRAUSS SWANEPOEL

Tianté Sacott (2) (right) with granny Marlene Scott and sister Jeanté (7). Photo: ZELDRÉ STRAUSS SWANEPOEL

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HER condition is taxing and taking care of her is a daily challenge, but she is never seen as a burden to her loving family.

Little Tianté Scott (2) of Bloemendal has been diagnosed with Rett Syndrome - a genetic postnatal neurological disorder so rare that she is believed to be only the 18th person diagnosed in the country, and possibly the only one in Port Elizabeth.

Rett Syndrome’s most prominent features include small hands and feet, repetitive wringing of the hands and or putting hands into the mouth.

Sufferers also typically have symptoms such as gastrointestinal problems, breathing difficulties and seizures. They are also unable to talk and rarely are able to walk.

Tianté, who is in the care of her grandparents, Marlene and Roland Scott, while her mother Kim works during the day, was diagnosed in September 2015 after a brain scan and blood tests were done. Before this confirmation, the family thought that the toddler was just slow in reaching her milestones because she had been born prematurely.

“She was a normal baby until she was a year and two months old. She played with toys and enjoyed being in her walking ring. After that she started falling behind in reaching milestones and refused to touch anything. Then we realized something was very wrong, and took her for testing,” explained Marlene.

Today little Tianté is unable to walk, stand and talk and she crawls with difficulty. She is unable to eat anything besides soft baby foods and cannot hold her own bottle.

“She also has a sleeping disorder - which means she can be wide awake in the middle of the night or not be able to sleep at all. We have to watch her the whole time because when she tries to crawl, she will bump into things. She doesn’t like touching toys and the only thing she is interested in is watching movies. Then she is at her happiest,” explained Marlene.

Marlene and Roland have nothing but praise for the neuro department of the Dora Nginza hospital, where they have to spend a lot of time with Tianté.

“Sometimes it’s hard because when she starts crying she is unable to stop for hours - she doesn’t like being out of her comfort zone. But the staff are always friendly and understanding,” said Roland.

Marlene and Tianté will be going to the Red Cross Children’s Hospital in Cape Town in August for a check-up. At this visit Tianté might receive a special standing frame which will help to keep her in an upright position, and help straighten her legs.

“Shortly after Tianté was diagnosed last year, her mother and I went with her to Red Cross where they assessed Tianté and also provided counselling, where they told us there is nothing that can be done to cure her condition. Basically the only thing we can do is to make sure that she is comfortable,” said Marlene.

It was very difficult for the family to hear and accept that their babygirl could either reach the age of 30 or 40, or possibly die at any moment.

“It’s tough...but what can we do? This child is a blessing to us and we are still grateful, because there are people out there with much bigger problems than ours. We love her so much and we still give thanks to God and we take each day as it comes.”

  • Marlene would like to reach out to other parents who might suspect that their child has Rett syndrome to start a support group. The only known such support group is currently based in Cape Town. For more info call Marlene on 072 952 6412.

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