Hello – I am Brett
And this is my story,
Our special little boy Brett was born on the 14 January 2004. Four hours turned into eleven hours and suddenly an emergency Caesar was in progress. Brett was out, but there was no sound. Doctors had him breathing but he was just not crying like we expected him to. We could see that his hands and feet weren’t normal.
That was the day our world changed forever.
During what we call the “the Dark Ages” we went from doctor to specialists to find out what was wrong with our little boy. Nobody could help us. Having lived through those “undiagnosed Dark Ages” and looking back on the last eight years we can really say that we have been truly blessed with the happiest, most loving little man who tackles his obstacles and hurdles each day with such confidence, positivity and the most beautiful smile!
I cannot walk – turns into I will walk
I cannot talk – turns into I will sing and sign
I cannot run – turns into I will be the fastest crawler and bum shuffler
in the world
The love we have our little boy is so great, we would never change him for anything in the world. We will overcome as many obstacles and hurdles that we can, with the help of his special needs school, and we will do it with determination. Brett has shown us that nothing is impossible but he needs your help to stay and progress in his special school.
Hello – I am Tayla
I was diagnosed with a rare syndrome called “Noonans Syndrome” soon after birth. I have a heart condition called “Pulmonary Stenosis”, delayed speech and delayed fine and gross motor development, short stature …. and I have the most beautiful curly hair.
My diagnosis means that I only started walking when I was nearly 4 yrs old and only recently started climbing and “running”. I can speak quite a few words already but my speech is limited. I have learnt to use a sign language called Makaton. This language is also taught at my school and allows me to communicate really well with people around me.
Like every other little girl, I go to school where I learn new things every day. I have made some really special friends at school and I grow more confident all the time.
Although having Noonans has delayed Tayla’s physical and speech development, she is flourishing on every other level. Tayla has been such a blessing to our family and brings us joy, laughter and happiness every day with her permanent smile!
Tayla has a tremendous amount of potential for a future in which she can be independent and self-reliant but none of these dreams can be fulfilled if she cannot get the continued support and teaching her school offers her. Her special needs school is a very special place where every child’s individual educational and social needs are catered for. Exactly what Tayla and her friends need the most!
Hello – I am Bahle
I was diagnosed with ‘Hypoxic Eschaemic Encephalopathy’ disorder, at 5 years old. I have delayed speech, delayed fine and gross motor development as a result.
My diagnosis means that I only started walking when I was almost 2 years old, but I still can’t climb, jump or run. The only words I’m able to say are “Mama”, “Dada” and my little sisters’ name ‘xxx’.
I haven’t had any specialised education so far. I’ve been attending normal day care centres but usually I didn’t stay too long as they couldn’t understand me. This means that I have had to stay at home for the last 3 years. I’m a very confident little boy that is willing to try anything.
Although having ‘Hypoxic Eschaemic Encephalopathy’ has delayed Bahle’s physical and speech development, he is the most adorable and lovable child. His mom has potty trained him and he has invented his own sign language to indicate he needs to use the bathroom. Bahle is a very happy child.
Bahle has a tremendous amount of potential for a future in which he can be independent; but none of these dreams can be fulfilled if he cannot get the continued support and teaching a specialised school environment would offer him. Funds to support this dream are necessary for Bahle’s family and this is where the Special Wings Foundation hopes to be able to play a meaningful part in Bahle’s future.
Hello – I am Sarah
I was born on 20 December 2002. The doctors told my parents all was well, and that I was in perfect health. But by my first birthday my mommy became worried that I wasn’t reaching my milestones.
The paediatricians weren’t too concerned saying that I may just be a little slow. The neurologist did brain scans and other tests, but no proper diagnosis was reached. She did say it might be a rare form of Cerebral Palsy and Ataxia, as well as Dystonia in my legs. They also did genetic tests, and told my parents it was not a genetic condition.
I have an awesome life, even though I cannot walk or speak. I am one of 4 kids, and I love my siblings. Turns out the doctors were wrong about it not being a genetic condition because my mommy and daddy loved me and my older sister Emma so much - they wanted more kids, and had Nathan and then Georgia very soon after. Turns out both of them have the same condition as me, but not to the same extent.
I have learnt so much at my school, including the sign language, Makaton. My family has also learned to sign, which makes communication just so much easier for all of us. I still find it very difficult to speak. There are wonderful therapists that come to our school and help us. I love my friends who are in wheel chairs, because I can walk around pushing them – the chairs give me stability. My parents have found it difficult to pay my school fees, and so I have stopped going. I miss everyone, and get a bit bored at home – my mommy has her hands full with us lot!
Hello – I am Nathan
My name is Nathan Mouton, and I will be 5 in July.
I am one of 4 siblings, and am a wonderfully happy boy. My oldest sister, Emma, is the only one of us who does not have special needs. My sisters Sarah and Georgia and I have the same condition, all to varying degrees. We have not had a definitive diagnosis, as even after scans, the doctors are not sure what caused our condition. But it is obvious now that it is genetic – must be some syndrome of sorts, but nobody has diagnosed it yet.
The reason my mommy and daddy kept on having kids after Sarah (10) was born, was because the initial tests done on her, showed that it was not a genetic condition. Our condition is not immediately evident, and even now we all look quite normal. As babies, the paediatricians believed all of us to be perfectly normal, and concerns were only raised after we weren’t reaching our milestones. The neurologists seem to think we have a rare form of cerebral palsy.
I do not have any balance, and can therefore not walk. I crawl where I want to go. I am a bit “floppy” in my upper body. I also cannot speak, but I have learned some signs to make communication with my family a little easier.
I adore animals, and am blessed to live on a plot, so we keep lots of pets. I love where I live, and am looking forward to my parents being able to set up a schoolroom with a teacher for us, as this is cheaper for us and also, I don’t like strange places very much, and feel very unsettled in a place I don’t know. Having school at home, would be the perfect solution for me.
Hello – I am Georgia
My name is Georgia Mouton. I am a little 3-year old girl, with a very big personality and a very big family. My parents love kids so much, there are 4 of us!
The youngest three kids in our family being Sarah (10), Nathan (4), and myself, all have special needs. At first the doctors did not believe Sarah’s condition was genetic, and so my parents had Nathan, and then me.
As babies, not even the paediatricians could tell something was wrong, but none of us can walk or speak. I am learning sign language now, which helps with communication.
I am busy and inquisitive, and have a strong will – I do NOT take ‘no’ for an answer. I can be quite serious – life is no laughing matter! But I do have to say, my family and all our pets can crack me up!
I spend a lot of my time playing outside, but sometimes my mommy has her hands full to keep all of us busy.
Mom and Dad are now trying to set up a school room for us at home, they are planning to hire a teacher, so that we can be kept busy more effectively. I am definitely looking forward to that!
Hello – I am Jade
Like all parents, we were extremely excited when we heard we were pregnant with our second child, a little sister for Matthew. Our high hopes soon turned into tears when our gynaecologist noticed problems towards the end of our pregnancy. We prayed and were extremely relieved when the emergency C-section went without major complications - except for Jade not breathing on her own initially.
At the age of six months, we realized that Jade wasn’t developing at the same rate her brother had developed. We sought help from a number of medical experts including a pediatric neurologist, who diagnosed Jade with Cerebral Palsy.
Devastated we had to come to grips with the prognosis that Jade would never be able to walk, to talk, to go to the bathroom or to live an independent life.
We did a lot of research and in 2005, took our life savings to pay for stem cell treatment in Holland. Although Jade progressed at a quicker rate, we understood that she would never reach certain milestones. We were warned that Jade could become epileptic, but as nothing was visible, we thanked God that He had spared her from epilepsy. In 2009 the epilepsy started. Daily injections and changing to the Ketogenic diet, initially showed a big improvement, but at times isn’t enough.
Due to financial constraints, we have had times Jade couldn’t attend her special needs school. When our business started taking strain, we struggled to pay for special medication; we asked ourselves whether we were doing enough. But, then we see a little girl that’s always smiling. A spirited young lady who is always trying to do more, pushing her own boundaries. A fighter in her own right and a young lady who’s spirit uplifts not only her day, but that of everybody around her.
Hello – I am Hamza
We were thrilled at the arrival of our baby boy Hamza after two girls. Excitement quickly turned to anxiety when 3 day old Hamza was admitted to hospital. Anxiety quickly faded when our seemingly healthy baby was discharged but God had another plan for us. Hamza was diagnosed with mild cerebral palsy.
Hamza was very late in all his milestones. Moving was difficult, eating even more so because Hamza could not swallow or chew. He only ate pureed food for the first few years of his life.
We religiously took him for physiotherapy, speech therapy and occupational therapy, but Hamza was very sensitive to touch and not responding or progressing. Time and perseverance eventually paid off and through the mercy of God, Hamza finally started to respond. Slowly, he progressed, starting to eat solid foods and eventually starting to walk at the age of four.
Hamza loves school, a love that stems from the kindness and affection he receives from his teachers and friends. At school Hamza is learning to read, and is being trained to use the IPad to communicate. Hamza uses sign language and gestures with his family. He can’t speak, but don’t let that deceive you, Hamza clearly understands when spoken to. Hamza loves being around people, playing with children and going to the mosque.
3 years ago Hamza experienced a seizure in his sleep. He has really struggled since. He was losing his balance, appetite, suffering from headaches and not the happy child we knew him to be. Three years later he is now starting to improve.
I firmly believe that this long, windy road that we are travelling with Hamza is our road to Paradise, so long as we pave this road with patience, perseverance and trust in God.
Hello – I am Christiaan
I am 5 years old. I have epilepsy, learning difficulties and a left hemi (weak left arm). I started walking at 2 ½ years, which was very exciting for my family – and since that day Mom & Dad have tried to give me all the opportunities that every other normal little boy has.
We were told in October 2012 that my epileptic condition has escalated and that I would have to undergo surgery. We were all very scared, but accepted the doctor’s recommendation and I went for the surgery.
November 2012 Mom and I went to Cape Town where over 35 days I had undergone 3 major operations. I was thrilled to be home for Christmas. In Feb 2013 we had a check-up – and so far so good!
I have been in a special school since 2011, but things aren’t so great at school. Mom is trying to find a new school for me that will be able to help me be learn to be independent, and guide me to be the best I KNOW I can be. Problem is the only schools that can do this are private schools, and they are very expensive.
Mom and Dad need all the help they can get - but I know I can trust them to do their very best to help me. I am very blessed to have a family who believe in me and love me - and who will always do their best to try to give me a normal, happy and successful future.
Hello – I am Tristan
And I have just turned 18 years old. I was born 11 weeks premature, and at 5 months I was diagnosed with Cerebral Palsy. I had many operations as a child, some more successful than others. But there was always no doubt that I was very bright and I have managed to stay at mainstream level education all the way through school.
At about age 6 I was getting too big for my legs to cope and so I used calipers for 3 years to stay on my feet. Unfortunately my condition internally was worsening and in Grade 9 my legs started closing and almost crossing over, causing hip damage and lower spinal contusion.
With constant physio and pain therapy I managed to keep moving but towards mid-Grade 10 my hip just got worse. Since then I have undergone two major surgeries to correct the alignment of the femur under the hip socket and have been in plaster for 19 weeks on both legs.
I missed my entire Grade 11 year and have now returned to school but I am struggling to get my legs going. I will never walk but I may be able to get to the point of independently using a walker in later years.
The other tough part of my life is my dad had a major accident in 2003 and has many physical and mental disabilities of his own, so my mom has to stay at home and look after both of us.
I am very blessed to have a caring family who does try give me every possible opportunity – I won’t let them down. I will finish school and make them proud!
Tristan received the “LION OF COURAGE” award at school in Grade 7 – see pic
Hello – I am Sarah
Our special little angel, Sarah was born on the 2nd January 2012. A planned c-section for the 11th turned into natural birth when Sarah was born 3 weeks prem and not crying or breathing as expected. It was a difficult labour and Sarah was deprived of oxygen and a stroke in utero is also suspected which all resulted in a severe case of Cerebral Palsy.
During that first month spent in NICU Sarah was fed through a GNT and did electrode therapy on Her jaw muscles to improve sucking and swallowing. When we took her home Sarah could suck but a Stoma was Inserted so we could supplement feeds (it took her 45 min to drink 50 ml). Sarah would also cry for hours on end in
what we now know must have been complete agony (she had severe reflux and constipation). As Sarah got older the Peg was used less and at 7 months we started solids but still the crying continued. We persevered for 4 years trying different combinations of foods under a dietitians supervision. When Sarah was 4 the reflux got so bad she just started regurgitating all meals. That’s when the dietitian took her off all solids and put her on Allernova Smooth, what a different child! Sarah now has no reflux and the crying is a distant memory.
Had I known 4 years what difference a diet can make I never would’ve put Sarah onto solids. She may never eat like a “normal child”
But at least she’s happy and hearing her laugh is absolutely precious