Twenty-four years ago, Helwinnie Audrey Edwin was born with a congenital heart defect and diagnosed with Down syndrome. She had a small hole in her heart, and her mother Helen Jau worried about what her daughter’s life would be like.
“My biggest concern was, what if I passed away before her? Who would take care of her?” says Jau. “When she was an infant, I made it my priority to prepare her to face her future. That meant sending her for physiotherapy sessions and various exercise programmes to improve her physical strength. I also enrolled her in kindergarten, government school and vocational training to equip her with more life skills.
“Her teachers and I worked together to build her strength. This included getting her to walk, do light jogging and sit-ups. Over the years, the hole in her heart closed by itself and her health improved,” said Jau from her home in Kuching recently.
Today, the young adult has chalked up several milestones, especially in sports.
In February last year, Helwinnie took home the gold medal in the ball sport, bocce (single category) and a bronze medal (unified category) at the Sarawak Women, Early Childhood and Community Well-being Development’s Special Olympics State Games in Sibu, Sarawak.
Last August, she clinched third place in the Macam-Macam Ada Bowling 2022 competition organised by non-governmental organisation Special Olympics Kuching Chapter of Sarawak.
Currently, Helwinnie undergoes tenpin bowling training at Sri Satok Community Based Rehabilitation Centre (SSCBRC) in Kuching. At the centre, she’s also learning basic life skills like cooking so that she will be able to function better as an independent adult.
Winning these trophies means a lot to this young woman.
“I like bowling and bocce. I feel happy,” she said.
Helwinnie has come a long way, and Helen could not be any prouder of her only daughter’s achievements.
“She enjoys sports very much, and she is excelling in bowling and bocce. Her skills are improving, and I’m so proud of her,” said Helen, a clerk at Yayasan Sarawak in Kuching.
Even though her daughter has special needs, Helen has worked hard to ensure that Helwinnie can achieve her dreams.
“Helwinnie has a good memory, even though she can’t read or write. So, to boost her social skills and confidence, we enrolled her in the Program Pendidikan Khas Integrasi (Special Education Programme) at Kuching’s Sekolah Kebangsaan Astana and SMK Demak Baru.”
The mother of two says parents of children with special needs must accept their child’s condition and love them unconditionally.
“Thankfully I wasn’t in denial nor did I fall into depression when Helwinnie was diagnosed with DS. My husband and I reminded ourselves that our special child is a gift from God, and we needed to be emotionally strong to help her.
“Parents of children with disabilities must be strong in their faith too. Always believe God will be there to guide you each and every step of the journey,” the Kenyah woman said.
It is equally important for parents of children with special needs to teach their other children to respect their siblings with disabilities. Helen is lucky her eldest son, nurse Helwin Marshall, 25, has always been supportive of Helwinnie.
“From young, Helwin has been taught to respect his younger sister. He’s isn’t shy of his sister’s condition and he’s been trained to look after her too. In our family, no one uses words like ‘stupid’ or ‘idiot’. They hardly fight. I am proud of both my kids.”
“They may be diffferent but they have feelings, just like us. We have to guide them and love them with all our heart.”
Helen plans to retire early to focus more on her daughter. She plans to equip Helwinnie with more life skills so that she will be able to live independently.
“Although I love sewing and embroidery, I can’t teach her hand sewing skills because her eyesight isn’t good. She has an interest in baking and cooking, though. Hopefully, we can start a home business selling cookies and cakes. This is my dream so that she can stand on her two feet when her parents are no longer around.”