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About

“You never know how strong you are until strong is the only choice you have” Anonymous

 

Introduction

Cleft Friends is the only organisation in South Africa that does what it does…offering support to parents from the perspective of a lived experience rather than the expert view that other NGOs often approach helping. We are mothers who speak only from experience. We encourage new moms to celebrate their babies as a baby first by bonding with them through skin to skin contact, kissing and cuddling them and affirming them in every way possible. After this we tackle the challenges faced with *the cleft journey. We take the time to listen, and then empower moms to ask the medical professionals specific questions that will alleviate any anxiety or clear any misunderstanding of information about their child’s diagnosis. Our strength is attributed to the support of medical professionals both in private and government hospitals, who regularly refer patients to us. 

Mission Statement

Improving lives by empowering, advocating  & educating all South African’s affected by cleft lip and palate.

 

Staff

Heléna Cullis

Heléna Cullis

Heléna Cullis

Co-Founder & National Coordinator

The day Heléna’s son was born and diagnosed with a cleft palate changed her life. She had no idea what a cleft lip and palate was, and as she progressed on *the cleft journey she realised this is common of most people.  She was overwhelmed and it took time to process what the diagnosis meant and what the future held for her baby boy, Joel. She had to grieve for the idea she had about her first child and she had to embrace the reality that involved her new born needing plastic surgery when he was 6 months old and having to feed him with a special needs bottle. She realised that other parents were experiencing similar emotions and co-founded a South African cleft lip and palate parent support group called Cleft Friends. Through her work in Cleft Friends her team and her have helped more than 400 parents and children affected by cleft, trained 20 volunteer support mothers, pioneered an innovative and sustainable model nationally and compiled a parent guide that details *the cleft journey from a parents perspective.

Accréditations

  • 2016: Business Women’s Association (BWA) Regional Business Achievers Award(RBAA) 2016, Social Entrepeneur Category – Finalist
  • 2013: The Herald GM Citizen of the Year – Finalist
  • 2012: Algoa Bay Rotary Club’s “Paul Harris” award

Clinical Advisor

Sarah Barnes

Sarah Barnes

Sarah Barnes

Clinical Psychologist

Sarah is a clinical psychologist based in Johannesburg. She began her private practice in 2012 after completing her internship and community service in various government hospitals in Kwa Zulu Natal and Gauteng. Also during 2012 Sarah began work with the Smile Foundation as a Vodacom Change the World volunteer. It was during this year she was allocated the task of managing the Cleft Friends project as part of her work for the Smile Foundation. As she learnt more about the Cleft Friends project and its co-founder Helena Cullis, as well as the vision for the project,  Sarah gradually shifted the majority of her attention within Smile to Cleft Friends. 2017 is the sixth year Sarah has been working with Cleft Friends and she is proud of the journey the project has taken.  She looks forward to witnessing the continued growth of Cleft Friends in the future. 

Volunteers

Support Moms

Cleft Friends Support Moms

Eastern Cape 

  1. Biance de Villers (Port Elizabeth, Uitenhage & Despatch)
  2. Namko Runu (Grahamstown & East London)
  3. Jennilee Nel (Port Elizabeth)
  4. Bernadette Swartz (Jeffrey’s Bay)
  5. Christelle van Huyssteen (Humansdorp)
  6. Michelle Kingwill (Graaff Reinet)
  7. Nelisa Xotyeni (East London)

Gauteng 

  1. Karen Kriek (Randburg)
  2. Sylvia Mchunu  (Germiston)
  3. Gloria Mmutle  (Orange Farm)
  4. Jeanette Ayre (Benoni)

Kwa-Zulu Natal 

  1. Megan Pennefather (Gillet)
  2. Julie Marquet-Maurel (Hillcrest)
  3. Angela Petticrew (Malvern)

Western Cape 

  1. Megan Sampson (Belhar)
  2. Monique Meyer (Ottery)
  3. Taryn Dickenson (Parow)

Mpumalanga 

  1. Patricia Fulton (Witbank)

National Support for anyone born with a cleft

National Support for anyone born with a cleft

Madge Blignaut (Port Elizabeth)

Co-Founder

Madge was born with a unilateral cleft of the lip and soft palate at a time when not a lot of support and information was available to her parents. She underwent multiple operations and had to deal with bullying as a young girl growing up with a cleft. This led to emotional trauma and low self-esteem as a young woman. Despite life’s setbacks, leaning of her faith in God and discovering that part of God’s purpose for her life is to share her story. She now readily speaks at schools and organisations encouraging not just those born with a cleft but all young people to embrace their differences.

Madge together with her friend Helena, whose little boy was born with a cleft, decided to start Cleft Friends. At that time there was no support in South Africa for parents of and children born with a cleft.

 

Smile Foundation

Cleft Friends is a project of the Smile Foundation

Cleft Friends is a project of the Smile Foundation, 063-498-NPO.

We’re About Putting Smiles on the Faces of Children in South Africa!

The Smile Foundation is a South African NGO that assists children with any type of facial abnormality, to receive free corrective Plastic and Reconstructive surgery within South Africa. We help children who suffer from treatable facial deformities such as cleft lip and palate, burn victims, moebius syndrome (facial paralysis) and other conditions.

We are currently based in 7 Academic Hospitals around South Africa. We are investing in the medical teams we work with, through a Skills Development programme, and we assist the hospitals by purchasing equipment for use by the Department of Plastic and Reconstructive Surgery.

To date, we have changed over 1000 lives.

Our Chief Patron Nelson Mandela’s wish was for us to assist as many children around South Africa as possible.

www.smilefoundation.co.za

Toll Free: 0861 276 453

Help put a smile on a child’s face today! SMS “Smile” to 38413 to donate R10.

Smile Foundation Board Members

 

* The cleft journey is a term that Cleft Friends uses to describe everything relating to your baby’s cleft lip and palate experience from the time they are born to their last operation. This can include the following medical professionals Paediatrician,  Specialist “Feeding” Nurse or Lactation Consultant, Speech and Language Therapist, Plastic Surgeon, Audiologist, Otologist; ENT Surgeon, Paediatric Dentist, Orthodontist, Maxillo-Facial Surgeon, Clinical Geneticist, Psychologist – Counsellor.

Contact Details

Email: info@cleftfriends.co.za
Phone: (082) 393 1206

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