Not even Down’s Syndrome could hold my child down

She reflects your emotions. She is shy if you are; becomes teary when you cry and happy if you are. She seems like a happy girl. She keeps on calling her mother to make her hair neat.

She finally gets to the other children waiting for her. She loves hugging everyone. Her mother describes her as a gift that has taught her to love unconditionally. “She is grumpy sometimes, like any other teenager.”

Short with slanting eyes, Stuart walks head held high, shoulders raised and with a smile oozing self-confidence.

We shared a handshake but I could not hear what she said; Madeline Stuart has Down’s Syndrome, which impairs her speech. Her mother, Rosanne Stuart, quickly intervenes to echo her daughter’s message; “She is happy to see you.”
Stuart, whose mother fondly refers to her as Maddy, is a 20-year- old internationally recognised model from Brisbane, Australia with Down’s Syndrome.

Down’s Syndrome is a learning disability caused by an extra chromosome that affects physical and mental developmental. She speaks English and uses signs to communicate but her disability did not stop her from pursuing her dream.

Her mother explains, “Maddy really wants to change the way people discriminate against disability through gaining attention through social media. She wants people to know that Down’s Syndrome is a blessing, something to be celebrated.”

Her journey
In 2014, Madeline told her mother that she wanted to be a model. “We were at a fashion parade in November 2014 and Maddy, who was 18 years old then, said, ‘Mum, me, model’. My little girl always loved being in the spotlight. The next day, I took her for a photo shoot and she seemed to love it.

“I consulted with other parents with children living with Down’s Syndrome before doing anything. I wanted to know what other people thought about what we were doing and if it would be too controversial but everyone loved the photos. I created a public profile called Madeline Stuart on Facebook, and within a week, her photos had gone viral.

“So many people said she was an inspiration. She gave people hope that their children living with Down’s Syndrome could achieve anything they set their minds to,” Rosanne narrates.
While some people might have thought her dream to become a model unrealistic, Rosanne supported and encouraged her daughter because she believed in her. Since then, her daughter’s career has skyrocketed.

Stuart participated in New York Fashion Week in September, and walked the catwalk in fashion shows in Austria, Russia, London, Alaska, Canada and many other countries around the world.

In 2015, she was named Model of the Year by Mélange Productions, a fashion entertainment company based in the San Francisco.

Inspiring Ugandans
The young model was in Uganda last month to showcase the potential of children with disability in a bid to address the negative stigma they face in their daily lives.
According to Christa Preston, the executive director of EmbraceKulture, a Ugandan organisation addressing the rights and needs of children with developmental disabilities, these children face extreme stigma.

“Due to a severe lack of awareness in many parts of the country, they are considered a curse or a burden. They are often hidden away or shunned. “Madeline is a powerful role model for many of the children we work with,” says Preston.
“She has helped them believe they can overcome the stigma and be who and what they want to be. Her visit will break down many barriers and misconceptions and encourage many in Uganda to allow every child to dream and reach their potential.”

Raising Madeline
Madeline is the only child to Rosanne Stuart, a businesswoman in Australia. Until she was born, she did not know her child had Down’s Syndrome and even then, she did not know what the condition was.

“After I gave birth to her, the doctor had to explain to me what the condition was and it was a real shocker that she was going to be disabled throughout her lifetime. She always fell ill but we had to be there and support her. She had problems with her speech but I would help her pronounce some of the words that were difficult for her but she also uses signs for those words she cannot speak.

“I have learnt to respect, love and raise her as an independent girl that must do everything herself. She also goes to the gym and for dance lessons.

“Wherever I go, I take her. I am not ashamed but rather proud of who she is. I advise parents who have children with disabilities not to hide their children but instead bring them out.

“They should stop worrying about what other people think about their children. If I had not brought her to the fashion show last year, she would not know what it means or even admire to be a model,” says Rosanne.

What is Down ‘s Syndrome

Down’s syndrome is a disability that affects both the physical and intellectual development of a child. According to Dr Harriet Ajilong, a paediatrician at International Hospital Kampala, Down syndrome is a developmental disability which affects the way a child learns but not a mental illness.

A child with Down’s syndrome experiences delays in learning, speech and development but they are able to learn given time and tools.

The cause
“Down’s Syndrome is caused by an extra genetic material known as a chromosome. Chromosomes determine the colour of our eyes and hair, says Dr Ajilong. A normal person has 23 chromosomes but those with Down’s syndrome have 24. The condition happens at fertilisation and the extra chromosome can be carried in either the sperm or the egg.”

A greater risk of Down’s Syndrome occurs when a mother gives birth in her late 30s, couples that have had a child with Down’s Syndrome or couples with a relative who has Down syndrome.

However, Down’s Syndrome is no one’s fault. It occurs all over the world and happens by chance, not because someone did something wrong or because of an issue during pregnancy.

“Children with Down’s Syndrome are unique and the characteristics of one child may differ from those of another. They include; slanting eyes, a small mouth that makes the tongue appear large, low set ears, a floppy neck, poor muscle tone, cardiac abnormalities, delays to sit, talk or walk,” Dr Ajilong remarks.
Each child with Down Syndrome is unique and will differ in appearance, behaviour and ability. Some are more severely affected while others may be mildly affected.

Madeline Stuart, according to her mother, was badly affected by the disability especially during her childhood. “She has a problem with her speech and this has been there since childhood but she usually fell ill so I would be in hospital all the time. Her development was slow as well but love beats every disability.”

Diagnosis
In developed countries, an unborn child may be diagnosed during pregnancy at 15-20 weeks of pregnancy.

Dr Ajilong says, “Down’s syndrome is typically diagnosed when the baby is a toddler after parents have noticed certain physical characteristics or that the baby is not walking or sitting on their own.”

There is no cure for Down’s syndrome. However there is much that can be done to help a child with Down’s syndrome develop their abilities and reach their potential. Early intervention and enrollment in school are critical to help a child with Down’s Syndrome develop. It is important to realise children with Down’s Syndrome have many abilities.

The situation in Uganda
“There are no particular statistics,” according to Dr Ajilong, “Because most parents confine their children in the houses or keep them with their grandparents when they find out they have such symptoms so it is hard to compile numerical data.”

What help is there for such children in Uganda?
There are Non-governmental Organisations in Uganda that care for children with special needs like; Down’s syndrome Association of Uganda (Dosau), Angels’ Centre for children with special needs, Entebbe Children’s Welfare School, EmbraceKulture.