Cochlea implants and leukodystrophy South Africa
Cochlea implants and leukodystrophy South Africa
One afternoon, in a field next to the freeway near Diepsloot, a passer-by heard a baby crying. Wayne and his staff found Luc in a pink baby grow wrapped in a yellow towel. According to the GP he had been lying there for at least the whole day – sun burnt and showing obvious signs of neglect. Wayne took him home. The Social Worker came to see Susan and Wayne and, as she could not find an available cot in the homes she normally places abandoned babies, they decided to become a place of safety. Already he had crept into their hearts and his older “sisters and brother” insisted they kept him. Susan and Wayne made the decision to continue to care for Luc and on 8 September they became his foster parents. Their intention and heartfelt wish is to adopt him.
Luc is very much a part of our large family – son, brother, grandson, nephew and cousin. He brings untold love and joy to our extended family.
Although Luc is extremely visually aware and active, over the past months they became aware that he possibly had a problem with his hearing. Susan took him for a screening hearing test on 27 October where the Audiologist was concerned about his hearing and referred them to the Hearing and Balance Clinic. An Auditory Brainstem Response test showed that he has a severe to profound bilateral sensorineural hearing loss. We have received funding from Gift to Hear to fit Luc with 2 powerful hearing aids. He will have to receive intensive auditory training in order to learn to respond to sound with his hearing aids. The only long-term solution for Luc to be able to hear and learn to speak is to have a cochlear implant – thus the reason for my writing to you.
Susan and Wayne’s dream is to be able to adopt Luc as quickly and easily as possible, the heartache to give him back now would be unimaginable. In order for a cochlear implant to be done, Luc must legally be their son so that they are able to make medical decisions regarding him. To organize a private adoption will cost approximately R20 000.00, the only other alternative is to do it through the State – a long process when time is of the essence regarding the optimum effects of the cochlear implant.
Luc had the strength as a baby to survive being abandoned and was “given” to my sister as a precious gift, thus my wish is two-fold, and most ardent: to assist with his adoption and to provide him with the best possible chance in life with the cochlear implants. cochlea implant, leukodystophy, brain disease, leaukodystophy south africa, cochlea implants south africa, deaf children, adopt a child, sign language,
2 Responses to “Cochlea implants and leukodystrophy South Africa”
I am writing this on behalf of my sister, Susan, and her husband, Wayne, but mostly for their special son, Luc.
This is Luc’s story:
On the afternoon of 23 April in a field next to the freeway near Diepsloot, a passer-by heard a baby crying. Wayne and his staff found Luc in a pink babygro wrapped in a yellow towel. According to the GP he had been lying there for at least the whole day – sunburnt and showing obvious signs of neglect. Wayne took him home. The Social Worker came to see Susan and Wayne and, as she could not find an available cot in the homes she normally places abandoned babies, they decided to become a place of safety. Already he had crept into their hearts and his older “sisters and brother” insisted they kept him. Susan and Wayne made the decision to continue to care for Luc and on 8 September they became his foster parents. Their intention and heartfelt wish is to adopt him.
Luc is very much a part of our large family – son, brother, grandson, nephew and cousin. He brings untold love and joy to our extended family.
Although Luc is extremely visually aware and active, over the past months they became aware that he possibly had a problem with his hearing. Susan took him for a screening hearing test on 27 October where the Audiologist was concerned about his hearing and referred them to the Hearing and Balance Clinic. An Auditory Brainstem Response test showed that he has a severe to profound bilateral sensorineural hearing loss. We have received funding from Gift to Hear to fit Luc with 2 powerful hearing aids. He will have to receive intensive auditory training in order to learn to respond to sound with his hearing aids. The only long-term solution for Luc to be able to hear and learn to speak is to have a cochlear implant – thus the reason for my writing to you.
Susan and Wayne’s dream is to be able to adopt Luc as quickly and easily as possible, the heartache to give him back now would be unimaginable. In order for a cochlear implant to be done, Luc must legally be their son so that they are able to make medical decisions regarding him. To organize a private adoption will cost approximately R20 000.00, the only other alternative is to do it through the State – a long process when time is of the essence regarding the optimum effects of the cochlear implant.
Luc had the strength as a baby to survive being abandoned and was “given” to my sister as a precious gift, thus my wish is two-fold, and most ardent: to assist with his adoption and to provide him with the best possible chance in life with the cochlear implants.
Please help him to realise his potential as a gift to God.
Morning,
My name is Jonothan Skews and I am hoping to make a Christmas wish come true for my brother Wayne and his partner Susan,
Although this will be an amazing Christmas gift to them, their foster child Luc(pronounced luke – by registered officially “Costa Chauke”) will be the little boy, whose life will be fundamentally changed if their wish comes true and Highveld are able to help.
A little bit of background.
My brother and I run a small business together over the highway from Diepsloot in Jhb. Adjacent to the premises is a big open piece of veld, which backs onto the highway also over the highway from diepsloot..
In april of this year one of our employees heard a cry that sounded like a baby. He told my brother, who immediately organised all our guys to form a search line and they started combing the open veld adjacent to our premises.
It wasn’t long before they found, lying in the veld, a beautiful, 2 week old baby boy, lying there abandoned and alone on an icy cold Highveld morning.
Since then life for them hasn’t quite been the same, in a great but fairly complicated way.
After been told initially by the authorities to simply drop Costa off at the nearest police station in the hour following his discovery things have moved on and to cut a long story short, Wayne and Sue have fostered Luc and he is now 6 month old and the joy of their lives.
Clearly they did not drop him off at the nearest police station, but took him home and made the decision to make him part of the family. They proceeded with all the “official” paperwork/ process to foster Luc and the quite painful discovery of how he was abandoned and who his biological mother and father was. It was obviously a desperate situation that led to these event. Next was all the basic medical checkups and hiv test etc etc. Luc was finally officially fostered and has been with Wayne and Sue since he was found in the veld.
Since day one, Wayne and Sue have also concurrently been investigating how they can officially adopt Luc which in itself is not a simply affair.
The main crux of my email…..
After become suspicious that something was not quite right with Luke because of certain behaviour and what can be excepted as child appropriate behaviour for a little boy of this age, In about October, Sue took Luc back to the doctor. After many hours and many test is was finally diagnosed that Luc was diagnosed “ bi lateral severe to profound neural hearing loss”, profoundly deaf
This obviously came as a huge shock to Wayne and Sue, but mostly how this was going to impact a little boy who had already had such a tough start to his life. They never wavered in their decision to continue the process of adopting luc, if anything they were more committed now as the future for a little foster child in our country is already tough, let alone a deaf little boy without parents and family.
The reality is however that this has created many new challenges and outright difficulties with regard to how they provide for Luc now and in the future. Their lives were pretty shaken up when they found Luc and decided to adopt him, this latest new has added a completely new dimension to this initial decision and will impact them in many ways now and in the future. Both wayne and Sue are in their mid forties and this decision was very easy emotionally but I know what a strain it has caused in other areas.
Their financial position was already strained before Luc came into their lives and this latest news is going to add considerably to that reality… a reality unfortunately faced by many South Africans in our country.
The best outcome and Christmas dream would to be able to get Luc assistance in some way for a cochlea transplant in both ears. The cost are huge, apparently, R300 000 per side. Any assistance would be so hugely appreciated, maybe there is a specialist out there that would be prepared to do these procedures as a Christmas gift. I am sure family and friend would all contribute financially, but we would fall way short of making this a reality for Luc. The chance to hear would irreversibly and profoundly change Luc’s life now, into the future and would amplify his chances of making his life a huge success in our country.
For a little boy abandoned in the veld, he deserves everything we can possibly do for him and my wish is that Highveld came help make this happen in some or other way….in part …in full …or anyway they feel they can.
There is some concern that he may have also suffered some very minor brain damage in the first few weeks of his life but that is the next hurdle.
If you see this little boy and his beaming smile it make you realise that you don’t need to hear, to feel love, and give it to those around you,
But hearing will change his life in such a big way and be the best Christmas gift their family could receive.
Many thanks,
Jonothan Skews
0845333999