Cape Town - Parents and guardians caring for children born with a cleft lip or palate, or suffering severe burns, are finding much-needed support, guidance and a sense of community from parent and peer support groups initiated by the Smile Foundation.
Cleft Friends and U Matter are online support networks (via WhatsApp and Facebook) for children and their families to guide their recovery following post-traumatic physical, psychological and emotional scars inflicted by burns or cleft lip and palate.
National co-ordinator Helena Cullis formed Cleft Friends after giving birth to her son Joel, who was diagnosed with a cleft palate at birth.
“I had to grieve about the vision I had of my first child and embrace the reality that involved my newborn needing plastic surgery when he was six months old and having to feed him with a special-needs bottle,” said Cullis.
“The roller-coaster of emotions we’d gone through from his birth up to the day of his surgery had been overwhelming. We realised there was a gap in South Africa for a parent support group for cleft lip and palate and we wanted to help others so they’d know they are not alone.”
Since its inception in November 2009, over 750 families nationwide have benefited from the support group. Currently, there are 15 WhatsApp groups linking around 400 families.
Lead support mom for U Matter, Tebogo Tsotetsi, said parents and guardians of child burn survivors feel more comfortable approaching and confiding in her, knowing she has endured a similar pain.
U Matter is a support network formed in partnership between Smile and Avela Foundation.
Nearly six years ago, after returning home on a winter’s night, the family turned on a heater in the children’s bedroom. When they returned to switch off the heater a few minutes later, a blaze had consumed the room. Her youngest son Kutlwano died from smoke inhalation and her eldest, Molemo has had to endure countless surgeries.
To find out more, contact 082 393 1206 or email [email protected]
Cape Argus