Mandela Day outreach to disabled children
The Daniel and Friends Fund, a non-profit organisation dedicated to support disabled children and their families have made it their mission to show an outpouring love and affection on Mandela Day – Friday, June 18th. The team will be handing out nappies and milk to several special needs children, most of who cannot eat, drink or walk on their own.
The fund was birthed four months after 3-year-old Daniel le Roux lost his life to Leigh’s Syndrome, in August 2013. Daniels’ mother, Lianie Le Roux, explained that the fund was initiated by Daniels’ paediatrician, Professor Pieter Fourie. “He was the one doctor who gave us hope. He was that someone we were looking for, someone who did not give up and was willing to fight with us for Daniel’s life,” Le Roux says sharing that as a parent of a special needs child its easy to feel as if there is little support. “You feel alone and isolated. You sometimes just want to talk to someone that is in the same situation that you are. Your family and friends go on with their ‘normal’ lives and it feels like you are being left behind. Because no one that is not in that situation can understand what it really is about.”
Because of her close walk with the Lord, Le Roux was able to turn to the Bible for comfort and was inspired by the story of Daniel. “In the book, Daniel, the Bible talks about Daniel and his three friends that helped and supported him. And just as Daniel in the Bible, we are three mothers involved in the organisation,” Le Roux explains, sharing that the other Fund directors, Kate Laurie and Marilyn Conradie, are also mothers who have special needs children. Conradie’s son and daughter, Johan and Sanel, suffer from Metabolic Syndrome CDG1c, while Laurie’s two daughters, Marielé and Liza, were diagnosed with Aicardi-Goutieres syndrome. Marielé died exactly one week before Daniël, also due to complications of her syndrome.
“It is so easy to forget that there is a person in a disabled body — a person or child with feelings. A disabled child cannot talk for themselves. You as a parent must be their voice. But to be able to do that, you have to be strong and have the necessary support and knowledge,” she adds.
Le Roux explained how she hung on to faith as Daniel was diagnosed with Leigh’s Syndrome at the tiny age of 2. There was no cure and a poor prognosis. In September 2012, he suddenly stopped breathing but was resuscitated and put on a ventilator. Although doctors prepared the Le Rouxs for the worst, they refused to accept the prognosis and transferred their little boy to a hospital closer to their home.
Shortly after this, Daniel began treatment on a new drug, EPI 743, which was developed and tested in America. Le Roux recounts that, “There were lots of setbacks, infections with multi-resistant organisms, an emergency operation on Christmas Eve that nearly cost him his life, but Daniel kept on fighting, with a smile on his face. A smile that lit up the whole room. A little brave disciple of Jesus.”
On August 22, 2013, Daniel fell ill again with bronchitis and was admitted to hospital. The next morning his heart suddenly stopped. “I had to accept that my plans for my life were not God’s plan and that there is a bigger purpose in everything that happens. And that is how the Daniel and Friends Fund came into being,” says Le Roux.
The aim of the Fund is to support disabled children and their parents and/or caregivers. They strive to equip the parents with the necessary skills to be able to take care of their children, as well as educate the public about disability and raise awareness. Its declaration: “Every Disability has a Possibility.”
Le Roux states that, “Together we are going to reach new heights whereby many other children with disabilities will be helped. It is our dream, our calling and our passion. Life doesn’t always work out like one has planned, but through the inspiration of our children’s lives, it could be even better than we ever imagined or dreamed of.”
The Fund is planning two fundraisers over the next few weeks: A Winter dance with performer, Desmond Wells, on July 16, and a high tea for women with Mrs South Africa, Charne de Kock, on August 16. More information is available at www.danielandfriendsfund.org