Leanne Sterrenberg’s zest for life has forced her genetic disorder to take a back seat.
Diagnosed with Williams syndrome at the age of 4, she has refused to let it dictate her life, and has instead embraced it “as a long adventure”.
May month highlights Williams syndrome – a developmental disorder where a portion of DNA material on chromosome 7 is missing.
Many people with the disorder exhibit autistic behaviour and have distinct facial features such as prominent lips and premature gray hair.
Other characteristics include high blood pressure, low birth weight, heart problems, and weak gross motor and development skills.
Ms Sterrenberg, 36, from Thornton, was born at 28 weeks, weighing 1.4kg. Her twin sister died at birth while she suffered a slight lack of oxygen to the brain.
“I spent my first three months in hospital in an incubator and the next month in a crib at the hospital.”
At nine months, she had her first of two eye operations and started wearing spectacles she fondly refers to as “John Lennon glasses”.
“I only have 40% vision in my left eye and almost no vision in my right eye.”
She says 75% of people with Williams syndrome have some intellectual disability and that there are mild, moderate and severe cases of the disorder.
“They don’t like loud sounds, certain textures of different foods, certain smells. They have difficulty with daily tasks and have anxiety and meltdowns when their senses go into overload,” she said.
For Ms Sterrenberg, certain fruits such as canned peaches, guavas and pineapples are all she can stomach.
“I can’t stand the smell of the sea and the sound of thunder and lightning.”
She attended Bel Porto School for children with intellectual and physical disabilities in Lansdowne.
“Although I have this disability, I have not allowed it to affect my life negatively. I had a hysterectomy at 15 because I knew I would not have been able to cope with having my own children. I’m happy I had it done and that my parents made the right choice.”
Ms Sterrenberg started swimming as a teenager and joined Walmers Swimming Club in Kensington in 1997. She had special prescription goggles made so she could see underwater.
She got her provincial and national colours for South Africa and travelled the world racing against able-bodied and disabled swimmers.
“I won many medals, trophies and awards and held 18 South African records at one stage. I swam for the Special Olympics and also swam the Midmar Mile open water swim.”
She retired from swimming in 2012 and is proud of the friends she made across the world. One friend in particular, Petrea Barker, stands out.
Ms Sterrenberg met Ms Barker from Australia at an international swimming event in 2000 and they remain good friends, keeping in touch by email and Facebook.
After doing voluntary work for a while, Ms Sterrenberg now lives with her mother in Thornton and has taken up knitting for the non-profit organisation Nutty Knitters.
She has knitted an impressive 655 teddy bears in less than six years.
These have been donated to the Red Cross War Memorial Children’s Hospital and Milnerton’s Community Intervention Centre.
Her love for knitting teddies has earned her the title of “Teddy Bear Queen”, which she wears with pride, and she has also been thanked by the Table View Lions Club for her donation of teddy bears to the Brooklyn Chest Hospital.
“I see myself… not my disability,” said Ms Sterrenberg, who is proud of her achievements despite battling an incurable disorder.
“I don’t think Williams syndrome is the end of the world. It’s the beginning of a long adventure. Williams syndrome is what I have, not who I am”.