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CLEFT FRIENDS 10 YEAR CELEBRATION – STORY #6 “Talented”

This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

My beautiful daughter was born on the 4 December 2002 with a bilateral cleft lip and palate.

I was six weeks along when I found out I was pregnant. It came as a big surprise as I was currently focusing on getting a job.

Two weeks after finding out I was pregnant I started bleeding heavily and was taken into hospital. There was still a strong heart beat however the doctor did advise me to abort the baby after a week in hospital. I chose to trust in God. I was told she would never make it if I went into normal labour so I trusted in a miracle from God and waited anxiously until my caesar date.

I woke up after my caesar and asked for my baby, they said she was bathing and then she was feeding…I sensed something was wrong. They then came and spoke to me behind a closed curtain saying that something was wrong with the mouth of my baby.

I asked them to see her as I didn’t understand what they were saying. I was in shock as I looked at her. I immediately thought the worst, so I prayed to God asking for strength and phoned my husband to tell him. We at this stage didn’t even know what her condition was called.

I had to rely on feeding her with a syringe and as a new mom you want to breastfeed your baby so you can bond with her, but that was not possible for me. When my little girl was 4 days old we were referred to another hospital closer to my parents, as their help was needed, and this was where her check-ups and operations took place. I started using a syringe and an open mouth of a feeding bottle (I cut the nipple of the bottle teat so that the hole was bigger, this is what I mean by “open mouth of a feeding bottle”). I was reassured to know that she was growing stronger even though it was a challenge to feed her sometimes but after a feed she would laugh and be happy and I knew she was full.

The first operation was repairing the lip at five months. When I first saw her after the operation I was crying tears of joy and also tears seeing her in pain and not been able to do anything to ease it. Second, third and fourth palate operations took place and the fifth one was grommets.

When she eats pap and milk, the milk drips from her nose because she still has a small hole (fistula) in her mouth that still needs to be repaired.

She is a young girl who is talented, likes to draw, do art, things with her hands and singing. I thank God for her.

Keletso (16) dancing at the Parys Flower Festival in October 2018

When I gave birth I already had a name for her, Kesenogile, meaning that God did know about her before she was revealed to us. My mother named her Kelts, meaning a lesson and lastly my sister in law named her Nthabiseng, meaning make us happy.

That is exactly what she does and is: HAPPY.

Jeanette Mpondo
Parys, Free State

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage

CLEFT FRIENDS 10 YEAR CELEBRATION – STORY #5 “Smile Like Me”

This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!


Steven was born on 29 October 2006 with a unilateral cleft lip and palate.

At the age of 5 months he received his first operation to repair the lip and part of the palate and second one at the age of one year to completely close it.

In 2017 they did a bone-graft, removing bone from his hip to plant into his upper gum to assist with the exposure of the teeth.

And in November 2018, he received his braces.

One day he wants to become an Anaesthesiologist, where he wants to do pro bono work in assisting the Smile Foundation with operations. He has a passion in assisting kids that has gone through and is still going through the same struggles he endured.

With his Youtube channel “Smile Like Me” he wants to achieve a few things:

  • The first thing is to get one ambassador from each school (that was also born with a cleft lip and/or palate) to raise money for Smile Foundation and create awareness for cleft lip and palate patients.
  • Then he wants to be a supporting channel for kids that still needs to go through surgery and treatment through the Smile Foundation.
  • He also experienced being bullied about his looks and he wants to put positive words out there to assist them with this.
  • Last but not least he wants to make sure that they know, nothing must ever stop you in achieving what you want to do or become.

Click here and remember to hit the SUBSCRIBE button!

Anesta – Proud Cleft Mommy
Cape Town, South Africa

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage #smilelikeme

CLEFT FRIENDS 10 YEAR CELEBRATION – STORY #4 “Never Lose HOPE”

This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

This story was sent to us by one of our specialized support moms Roza. Roza lives in Bloemfontein and has been trained to be a Cleft Friends support mom, her daughter was born with a cleft palate as well as Pierre Robin Sequence; a rare disease that she explains in her story. If this story reaches parents who are also affected by PRS please feel free to Whatsapp Roza on 082 698 8571. She has a wealth of knowledge from her own lived experience with Lilliana and will be able to connect you with other parents in South Africa who are also facing similar challenges.


“Our journey started just over 4 years ago, a journey that in the beginning felt like it would have no end.  With having a healthy pregnancy our big day arrived to welcome our biggest blessing into the world. Well to our biggest surprise our little Lilliana came with one of the biggest surprises, something that has changed our lives. 

Lilliana was born the 2 July 2014 at 08h20, weighing 3.29kg, a beautiful bush of hair all 10 fingers and toes and what looked like completely healthy.  To our shock after having Lilliana turn a slight blue in colour, the nurse came in asking if I saw that my child had a hole in her mouth. The first thing we did was ask Google…  And well it was the first time that I had ever heard about or even seen a cleft.

That evening Lilliana’s paediatrician arrived and immediately admitted her into NICU, for non-medical terms the NICU is where all premature or babies that are born with a condition of some sort go to. Well here I was a new mother not knowing much about any of this and facing what felt like a one huge mountain to climb.

48hrs after Lilliana’s birth we received the diagnoses: Pierre Robin Sequence. Not only were we dealt with a cleft palate but we were handed a rare disease and something that not many knew of or how to deal with. So we were left to research and to try and find out as much as possible.  Most of you reading this are probably wondering what Pierre Robin Sequence is.

PRS is a rare disease, it consists of a number of abnormalities affecting the head, face, smaller than normal jaw, an enlarged tongue that is placed further back than normal which in turn obstructs a very narrow airway and cleft.

At 4 years old Lilliana, has had to endure more surgeries than most adults.  Her very first surgery was at 11 days old a glossopexy (pulling her tongue forward to help open up her airway), after 2 days later Lilliana managed to pull her stiches loose. At 24 days old her next surgery was scheduled and that was a Mic-Key because Lilliana was struggling to feed.

After 30 long days we were finally discharged and sent home with feeding lines, and an oxygen machine.  All this had become our “normal’’.  Times were tough and yes it was difficult to accept but we managed and survived it. Lilliana’s soft palate repair was scheduled for the 18th February 2015, the operation was successful.

I could carry on with Lilliana’s story for days, if not years and literally write a novel but this is not my intention. 

I want each and every single one of you reading this is to know that yes things may seem tough, yes things may seem difficult but if there are words that I can leave you with, they would be:

Never lose HEART, Never lose HOPE, Never lose FAITH, Never ever GIVE UP. All this does eventually get easier and even in the darkest of times never forget that.”

Roza Sousa Freitas

Bloemfontein, South Africa

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage

CLEFT FRIENDS 10 YEAR CELEBRATION – STORY #3 “I am a Warrior”

This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

My name is Vicente Celestino Camarena. My parents named me Vicente Celestino because in Spanish my name has a strong meaning. I am a warrior, a conqueror, and a gift from God. I’ve had a tough journey but with the love and attention of my parents I have the strength and will to surpass anything and everything that may come my way. I was born May 22, 2018, I’ve had numerous appointments and weight check-ups because I was not gaining weight, matter of fact I was losing weight. My parents were stressing out trying to figure out what they were doing wrong but they never gave up on trying new methods and new bottles until they found Dr. Brown specialty bottle and going up on calories on my formula (from 22 calories to 24 calories). Shortly after at three months, I had my lip surgery which from there on I gained weight with no problem, went down on calories, and I didn’t have to use any special bottles. I started with solids at 4 months because I am a hungry little boy and from there on I have been healthy and my doctors’ are so proud of how much progress I have made in such a little time. My parents went from liquidizing my food to eating straight solids. Now, I am like any baby! Just like the meaning of my name, I am a warrior, I am a conqueror, and just like how I went through lip surgery as if nothing ever happened, it’s exactly what I am going to do with my palate surgery that is coming up.

To my fellow cleft parents don’t give up, don’t ever stop trying new methods, stressing out is okay because it means you want the best for your child. Join social media groups just like Cleft Friends because we are all a big family and here to help each other out because at the end of the day we have a similarity, our precious babies affected by clefts are gifts from God.

You are not alone!

Story sent by Layla Pomerino
A proud cleft mommy 🙂

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage

CLEFT FRIENDS 10 YEAR CELEBRATION – STORY #2 “YEEEHAAA!”

This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

Photo Credit: Gerdie de Lange

Milanje is the Cleft Friends cover baby! She was born with a unilateral cleft lip & palate. Her photo has traveled the country as an inspiration of hope for all new families affected by cleft lip and palate. The way her mom, Biance, is embracing her and kissing her wide open cleft speaks about her acceptance and unconditional love for her baby no matter what.

Biance, Milanje and Francois (before op)

“Wow, it was so hard seeing our tiny princess disappear behind swinging doors of the theater with her father. Right then and there my heart broke into a million pieces. Nothing could have prepared us for how amazingly different she actually looked after the operation. Our bonding had to start from scratch. It took me a good two weeks to get used to her new face.” Biance de Villiers, Port Elizabeth, South Africa.

Milanje (4)

We have watched Milanje grow and have walked the cleft journey alongside her family since the day she was born. Milanje has had two cleft surgeries and is now 8 years old. Biance is one of our trained support moms and is hands on with new families, affected by cleft lip and palate, as they start their cleft journey in the Eastern Cape. It was an absolute joy looking back and finding photos of this sweet family since 2011. To see how Milanje is excelling at life and to hear how well she is doing at horse riding is a pure delight. Read more from a post on her school’s Facebook page. She is our very own Cleft Friends cowgirl – YEEEEHAAAA!

Photo Credit: Erika

In mid February 2018 Milanje had her first horse riding lesson at Altona Equestrian Centre, under the amazing hand of Alma Hough. She has always had a love for horses, so this was a dream come true for her. She loved every second. It wasn’t just fun and games, as she had to do exercises to become riding fit and to manage her balance in the saddle. She was very dedicated and did her exercises morning and evening. She has a very close bond with her pony, Peter Pan, who also had to learn all the Western Games with her. He was not the easiest pony, as he was abused badly. He was rescued and given to the centre where she is riding. She loves him very much and he has come a long way too.

This year we registered her with Sanesa (South African National Equestrian Schools Association) where she represents Curro Westbrook during events. She is also registered with the Port Elizabeth Western Mounted Games Club (PEWMG).

In January 2019, she took part in her first Qualifier for Western Mounted Games. She did not place in any of the events during this qualifier. She did however get the award for “Riding the most difficult pony”. Peter Pan did not have a good day. She was very disappointed, but was determined to work harder and try again in Qualifier 2.

On 3 Feb she took part in Qualifier 2. In this event she got a 4th place in Keyhole and also placed 8th overall in her division on Level 0 primary school Sanesa riders. She also won the award for the “Most improved rider.” She is the youngest in her level with the least experience.

On 17 March, she competed in Qualifier 3. During this event she placed 9th overall for Sanesa riders and 7th overall for club riders. She also placed 3rd in the Figure 8 flags game for club riders and 3rd place for Poles II for club riders. She also won the “Most Improved rider”.

On 7 April, she competed in Qualifier 4. She placed 8th overall for Sanesa riders, 4th place in Keyhole for Sanesa riders, and 2nd Place for Keyhole club riders. She got the “Tiny Tot of the day” trophy for being the rider who had a good day in the arena, displayed excellent sportsmanship towards her fellow riders, rested her pony well between games, made sure he had food and water. They call this the Golden Combo.

Milanje will compete in Qualifier 5 on 5 May 2019. She is determined to obtain a 1st position in her game before the qualifiers at the end of July.

Post copied from https://www.facebook.com/CurroWestbrook/ with permission from Biance de Villiers, Milanje’s mom <3 Thank Biance 🙂

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage

CLEFT FRIENDS 10 YEAR CELEBRATION – STORY #1 “A MOTHER’S SIN”

“A Mother’s sin”. This is the title of a book written by Mia Henry of Port Elizabeth. I haven’t read the book, but I heard the author’s interview on local radio when the book was published, and I immediately identified with it. As mothers of children born with congenital defects, we beat ourselves up with the guilt of what we could have done differently to avoid the hardship of hospital admissions, surgeries, therapies and teasing that our children will need to face. This guilt is a Mother’s sin!

My son, Thomas, turns thirteen this year! Thirteen! I wish I could say I wouldn’t have had it any other way, but honestly, the emotional turmoil the last thirteen years have brought have not been easy. My son was born with a soft palate cleft which was not diagnosed until he was four months old. I endured being told by a paediatrician that the quality of my breast milk was the reason my son wasn’t gaining weight to trying every teat on the market to get him to drink more than 25ml in an hour. My son had had seven hospital admissions by the time he was seven years old, for cleft repair, two inguinal hernia repairs, 2 MRI’s, a Baker’s cyst and several sets of grommets. Do not underestimate the toll that these hospital admissions and doctor visits take on your little ones. My boy was a ball of anxiety and still struggles with change, but we have learnt to manage it together.


📷 Jeff Latham photography

Despite these hardships, he has excelled academically at school and represented Nelson Mandela Bay in chess since 2014. In Grade 4 he passed the test for musicality at school and was offered the opportunity to learn to play a musical instrument. He chose the flute! I remember crying when I told the music teacher that he really wanted to play the flute, but I wasn’t sure he would be able to get a sound out because of his cleft palate. She agreed to give him the opportunity. After 8 weeks of trying to get a sound out, she called me to tell me he should probably forget about flute and take up guitar. I asked her to persevere for one more week. She did and at the end of 2019 he achieved 89% for his Grade 2 flute exam with the Trinity board of music.

He is my miracle boy, my pride a joy and this year he enters his teens. A whole new set of changes and challenges, as braces are fitted and high school looms, but the last thirteen years have groomed him into a young man that will be able to overcome any adversity put before him.

Teri-Lynne
Port Elizabeth, South Africa
xxx

This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!

#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage

Newsletter #2 for 2017: Reflecting on a Winning Year for Cleft Friends

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Welcome to the second newsletter for Cleft Friends in 2017.
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Reflecting on a Winning Year for Cleft Friends


This year we have closed the gap by establishing the Cleft Friends brand as a solid partner of the Smile Foundation. We are excited to showcase our new logo and CI in this newsletter and trust that you will enjoy it as much as we have enjoyed creating it.

As we look back on 2017 and calculate the kilometers driven and flights taken to create awareness about cleft lip and palate and connect parents with each other in communities all over South Africa; every kilometer traveled was worth it and we would do it all over again in a heartbeat. A special highlight for 2017 walking into a ward at a Smile Week in Bloemfontein and getting to listen to these beautiful children sing their hearts out: 
 

Here are other highlights from the year:

Empowered


Our one-on-one support has grown our database to over 400 patients and parents across South Africa. Cleft Friends had the joy of travelling to seven Smile Weeks this year and the privilege of meeting 78 parents and children from all over South Africa affected by cleft lip and palate. We reached the North West, Northern Cape, Eastern Cape, Gauteng and Western Cape.

Our regional Whatsapp groups have grown to nine and we now cater for more than English speaking parents, we have grown to include Xhosa, Zulu and Afrikaans speaking parents. We have groups in Gauteng, Eastern Cape, Free State, Mpumalanga, Kwa-Zulu Natal and Western Cape.  Click here to find a Whatsapp Group in your area and connect directly with parents in your region.
Our Community Events took the shape of Breakfasts in seven cities and a High Tea in Port Elizabeth. Our partnership with SASHLA for the Breakfasts in Melrose Arch, Witbank, Pretoria, Durban, Bloemfontein, Port Elizabeth and Cape Town was a great success as 98 adults and 43 children came out to hear about the “Importance of Speech Therapy in the Cleft Journey”. Click here to view photos from these events. This year’s “My Story” High Tea took place on 12 August and showcased various role players in the cleft journey.  The High Tea took the setting of a talk show with talk show host, Michelle Brown, and various individuals who shared their story, from medical professionals to patients and parents. We hosted a total of 300 guests at the Tramways Building in Port Elizabeth.
Click here to view photos from this event.

Training Support Moms

On National Women’s Day, 9 August 2017, we trained three support moms in the Western Cape and grew our team of 17 support moms to 20. It’s with great pleasure that we welcome Monique Meyer, Megan Sampson and Taryn Dickenson to our team.

Advocated


This year Cleft Friends reinforced our core values by hosting a Baby Quilt competition as well as attending an event in Johannesburg called “The Patient Huddle”.

The winner of the Baby Quilt competition and an amazing two night stay at Kuzuko Lodge was Lesley Price from East London. Thank you to accredited judges Shan Fox and Antoinette Kriel as well as Yolanda at Pied Piper Quilt Shop in Port Elizabeth for helping us run a successful competition. We were inundated with donations of the most beautiful quilts that have been made with love and will be treasured by those affected by cleft lip and palate. Baby quilts were donated from Knysna, George, East London, Grahamstown, Port Elizabeth, Jeffrey’s Bay, Humansdorp and even as far as Durban. A huge thank you to everyone who contributed.
We were blown away by “The Patient Huddle” hosted by Genetic Alliance South Africa, Rare Diseases and Campaign4Cancer. We are all advocates for our causes and when we stand together we are stronger. To the organisers of this event, Kelly du Plessis, Lauren Pretorius and Helen Malherbe it was a privilege to attend such a professional and purpose-filled event. Thank you. Speakers included Lauren Pretorius (Campaign4Cancer), Neil Kirby (Werksmans Attorneys), Kim Ballantine (Camber Coaching), Vanessa Carter (hcsmSA) , Dr Helen Malherbe (GA-SA) among other panel guests. Topics included, How to set up a non-profit organisation or work together for sustainability? How will NHI impact my advocacy efforts? Understanding patient rights, patient confidentiality and POPI when running a disease awareness campaign. Best practices in the right of referral between healthcare professionals and patient advocates. Advocacy 101. How to manage burnout as a patient advocate or group leader?  Disease awareness through social media. Capacity building in dealing with the media, and Alliance Group Work. It’s events like this that empower South Africans to continue doing good things in our communities.

The Patient Huddle

Left: Heléna Cullis and Kim Ballentine (Camber Coaching) at the Patient Huddle. (#thehuddle)

Educated

 
We have spent the past few years listening to parents whose children are affected by cleft lip and palate and we have heard their needs. We are proud to announce the launch of three amazing resourced that can be read on our website, click here.  
  1. Cleft Lip and Palate Parent Guide (c) Smile Foundation
  2. Feeding a baby with a Cleft Lip and Palate (c) Georgia Jammine
  3. How Can I Help My Baby with a Cleft Palate to Talk? (c) Georgia Jammine
Our Parent Guides will be pure gold on *your cleft journey.

To all the parents
whose children have had surgery this year
in both government and private hospitals,
we are proud of the courage and strength you had.

Please take note our banking details have changed, see below. Should you make a donation or payment to Cleft Friends please email the proof of payment to info@cleftfriends.co.za.
 
The Smile Foundation Donations Account
RMB Private Bank, Account No.: 62193026864, Branch Code: 26-12-51,
Ref: CleftFriends/YOURNAME
 
Wishing you and your family a Happy Christmas and Prosperous New Year!
 
Closing the gap!
Copyright © 2017 Cleft Friends a project of the Smile Foundation, All rights reserved.

Our mailing address is:
info@cleftfriends.co.za

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Newsletter #1 of 2017

 


Welcome to the first quarterly newsletter for Cleft Friends of 2017.

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Cleft Friends is geared to support parents throughout South Africa. Together we aim to improve lives by empowering, advocating & educating all South African’s affected by cleft lip and palate. To all the parents who have children scheduled for surgeries in both government and private hospitals this year, we look forward to meeting you. 

Celebrating in Stories of Hope and Overcoming


We are kicking off 2017 with the theme My Story. Throughout the year we will be placing stories on our website and social media about cleft lip and palate and the impact Cleft Friends is making in communities throughout South Africa. We want to hear your stories and we want to celebrate victories and milestones with you. Click here if you have a story you would like to share with our cleft community.

The Cleft Friends Breakfasts will be happening again in Durban, Witbank, Bryanston, Pretoria, Port Elizabeth, Cape Town and introducing Bloemfontein.

We will be expanding our Facebook discussion to include focused conversations called Let’s Talk Clefts starting with the Smile Foundation’s Clinical Psychologist, Sarah Barnes at the end of February 2017. Click here if you would like to be added to the Let’s Talk Clefts mailing list. Keep an eye on our website and social media links for upcoming dates and fundraising events and how you can get involved.

This year we are running an exciting, creative competition. Design and make a quilt for a baby diagnosed with a cleft lip and/or palate by entering this competition. Entries close 12 July 2017. You could win a 2 night stay at Kuzuko Lodge in the Addo Elephant National Park that lies hidden within the cavernous bushveld of the Eastern Cape. All you have to do is enter a quilt in the Cleft Friends Baby Quilt Competition. Judging by SA Quilters Guild accredited judges.

“When you make something with your hands which invariably involves time, effort, love and often sacrifice, and then you give it away as a gift, you are truly giving of yourself.  These quilts are loving gestures which will bring much comfort and joy, and will surely be valued and treasured by those who receive them.” Shan Fox



Please take note our banking details have changed, see below. Should you make a donation or payment to Cleft Friends please email the proof of payment to info@cleftfriends.co.za
 
The Smile Foundation Donations Account
RMB Private Bank, Account No.: 62193026864, Branch Code: 26-12-51,

Ref: CleftFriends/YOURNAME

Wishing you all of the best in 2017!

Closing the gap!


Helena Cullis,
Project Manager
Email: helena@cleftfriends.co.za
Cell: 082 393 1206

 

Copyright © 2017 Cleft Friends a project of the Smile Foundation, All rights reserved.

Our mailing address is:
info@cleftfriends.co.za

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Phone: (082) 393 1206

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