Eveready (PTY) LTD
Eveready (PTY) LTD
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A smile speaks a thousand words

Date : 27 September 2013

Cleft Friends was founded in 2009 by Helena and Matthew Cullis, whose son, Joel, was born with a cleft palate in that year. A cleft of the lip and/or palate occurs in about one in 700 births and occurs in all ethnic groups and in both boys and girls. Yet, at the time of Joel’s birth, there was no support for parents of children with cleft lip and palate in South Africa.

The first days after giving birth to a child with a cleft palate or lip are a roller-coaster of emotions and worry. Helena and Matthew were moved to start a website to provide advice and reassurance to other parents going through the same experience, and be a positive source of information and support. Helena explains: "The medical professionals were very kind to us, but all we wanted was to do was connect with another parent whose child had been born with the same diagnosis and for them to tell us their child was OK. When your baby is born the last thing you expect is for him or her to need surgery. It was a traumatic time for us as a family, especially the six months leading up to Joel's surgery.

There are three major types of cleft lip and/or cleft palate. A cleft lip is affects one side of the lip or both sides simultaneously. Surgery can be performed between three and six months after birth and involves stitching the skin of the lip together. A cleft palate is when the palate cleft affects parts of the soft palate and extends into the hard palate and the gum. The corrective surgical procedure can be performed between four and 12 months after birth and involves repairing the area in layers. A lip cleft and palate cleft – is a unilateral or bilateral cleft that runs from the base of the nose through the gums and palate. Surgical procedures for this involve a combination of the above two.

The incredible support provided by Cleft Friends has three strands, all with a positive message

  • Survival: helping parents to understand what to do you if their child is born with a cleft lip and/or palate
  • Emotional: supporting parents as they learn to feed their baby with a special needs feeder, as well as anticipate their child's first or multiple operations
  • Moving forward: empowering parents to accept their situation and celebrate their child by building their confidence and self-esteem

During a time of worry the organisation helps parents and children by providing support as soon as possible after birth through a support group network of cleft parents who have had training and hands-on experience. The good news is that cleft lips and palates are usually fully treatable over time. These amazing parents have all walked the same road and want to share their stories of hope with others. Helena concludes: "We find it’s the initial contact with another parent that makes all the difference. It sends a message of hope and relief in a traumatic situation.”

In 2012, Cleft Friends became a project of theSmile Foundation, a South African NGO that assists children with any type of facial abnormality, to receive free corrective plastic and reconstructive surgery within South Africa. Helena continues: "The Smile Foundation has empowered us to train other cleft parents throughout South Africa to support each other. Selected parents have even undergone training with a Clinical Psychologist at the Smile Foundation, so they know what to say and what not to say.”

Despite still being a young organisation, Cleft Friends already has over a hundred cleft patients on their database and it continues to grow: "We are in the process of rolling-out our model in the Eastern Cape before moving into other regions of South Africa. We now have support parents in the Eastern Cape, Western Cape, Gauteng and Mpumalanga. There are also support workshops available in Gauteng, Limpopo Province,Western Cape, Eastern Cape and the Free State.

Eveready see Helena and Matthew as an inspiration. Their help for other parents going through the same difficult experience, the positivity they exude, and the kind support offered to help cope with children born with cleft palates is just so overwhelming.


Learning how to feed Joel with the Haberman, Special Needs Feeder

Learning how to feed Joel with the Haberman, Special Needs Feeder

Daddy and Joel in hospital after Joel's cleft palate operation

Daddy and Joel in hospital after Joel's cleft palate operation