Epilepsy SA Newsletter – September 2011

FROM THE DESK OF THE NATIONAL DIRECTOR It seems strange to be writing to you from an empty desk.  The previous National Director, Noëline de Goede left Epilepsy South Africa on 10 September 2011 after a decade with the organisation.  Her staff will remember Noëline fondly as a leader of distinction with the ability to clearly see the road into the future – a strong woman who will be missed. As Acting National Director I will be standing in until the appointment of the new Director and welcome you to the September 2011 newsletter which is again packed with news and information. Several articles in this issue focus on employment for people with epilepsy and other disabilities.  We are proud to report on the first Action My Business Growth workshop which offers sustainability solutions for protective workshops and income generation projects.  August and September saw the finalisation of the advocacy programme for women entrepreneur association and small business associations.  The BankSeta offers learnership opportunities in the banking and microfinance sector, while the SA Disability Development Trust launched a national learnership programme in partnership with the W&RSETA.  Peopleplus has joined the Department of Labour to create new opportunities for job seekers with disabilities.  We are also please to introduce a new feature presenting career opportunities for people with epilepsy and other disabilities.  Contact us if you would like to advertise vacancies or development opportunities for people with disabilities. For those readers lucky enough to be travelling abroad next year we provide information about the 28th Annual Pacific Rim International Conference on Disability and Diversity in Hawaii. The winners of the Jubilee Photo Competition are announced after more than 300 photographs were submitted to the IBE.  However, this is not the end of life through a lens.  The Western Cape Branch has integrated art into the disability sensitisation programme by engaging 15 learners with disabilities in a photographic project with the Frank Joubert School of Art.  In addition, the Branch reports about the AGM and new developments. We thank all the Rock Idols who joined us in celebrating Casual Day.  If you missed out on this opportunity, bookmark the first Friday in September 2012 to ensure that you are part of Casual Day 2012. Sherri shares her experiences about her daughter Emilee diagnosed with epilepsy at a very young age.  She moves us from tears to joy telling this story, while Rilandi’s story draws the picture of the rosebud with lissencephaly. The Epilepsy Facts Corner has become a regular feature offering information and insight about epilepsy and in this issue we focus on a link identified between schizophrenia and epilepsy. Like the brightness of spring dawning all over our country, we look forward to new beginnings and developments.  Join us in celebrating life in this season of re-birth. Regards Marina Clarke Acting National Director Back to top

Growing protective workshops and income generation projects In recent newsletters we reported about the implementation of the Action My Business Growth (AMG) Programme within Epilepsy South Africa.  However, this programme was developed specifically for women entrepreneurs and thus did not address our entire target market.  With approval from the International Labour Organisation (ILO) we adapted this programme to suit the needs of protective/sheltered workshops for people with disabilities, as well as income generation projects. Protective and sheltered workshops have for many years received bad press as “dumping grounds” that do not economically develop and empower people with disabilities.  The new disability version of the AMG Programme aims to provide the necessary skills and strategies to ensure the financial sustainability and growth of these workshops to enhance job security and development opportunities for people with epilepsy and other disabilities. Similarly, income generation projects (often referred to as self-help groups) have done little to provide economic and financial independence for people with disabilities.  Reference is often made to the fact that people with disabilities earn very little (if anything) as members of these projects, leading to disillusionment and frustration.  The adapted AMG programme offers the opportunity for members of such projects to identify the growth potential of their businesses as a pathway to economic viability and sustainability leading to increased earning potential for the members. While much of the original material was retained, disability-specific information was added and the approach adapted to suit the identified needs.  For example, a case study was developed based on an income generation project.  It became clear during the adaptation process that facilitators would need to be familiar with the disability sector and especially the needs of people with disabilities. The National Office of Epilepsy South Africa piloted the disability version of the AMG Programme through a workshop held on 5 September 2011 in Cape Town.  This workshop formed part of the organisation’s Economic Development Conference on 5 and 6 September 2011. For more information contact Marina Clarke on (021) 595-4900 or via email (economicdev.no@epilepsy.org.za) Back to top

Advocacy skills training for small business associations and women entrepreneur associations Readers of this newsletter have been following the progress of the advocacy skills programme we are implementing on behalf of the International Labour Organisation (ILO) Women Entrepreneurs Development and Gender Equality (WEDGE) Programme. In total we have facilitated nine workshops – one in each province.  In our previous newsletter we reported on the first four workshops (Gauteng, the Northern Cape, Mpumalanga and the Free State).  During August 2011 we facilitated the remaining workshops. The Western Cape workshop was held in Cape Town on 11 August 2011 and drew interest groups from both urban areas around the Mother City and rural areas (as far afield as Ceres and Tulbagh).  The workshop was attended by 25 delegates representing a wide array of organisations, including the South African Women Entrepreneur Network (SAWEN), Women in Construction, Women on Farms, Women in Business Empowerment Network (WIBEN) and several co-operatives.  This workshop had immediate impact with several of the co-operatives attending joined WIBEN and immediately arranged events in the months to come, including training and advocacy campaigns. The Eastern Cape workshop was originally planned for Port Elizabeth, but relocated to East London at the request of delegates.  As such, the workshop was held in East London on 30 August 2011 through the active support of the Eastern Cape Development Corporation (ECDC).  Not only did the ECDC make training facilities available to us, but also supported the programme financially.  The workshop was attended by 14 delegates and included representatives of the SEDA Construction Incubator, the Vukuzenzele Disabled Association (based in Lady Frere), the Department of Labour and co-operatives. The KZN workshop was held on 2 September 2011 in Durban in partnership with Trade and Investment KZN.   13 delegates attended the workshop, including representatives from disability organisations, cooperatives, the financial sector and government departments from as far afield as Kokstad. The North West workshop was held in South Africa’s platinum capital, Rustenburg on 13 September 2011.  This was one of the largest workshops with more than 30 delegates (mostly women) attending.  The need for giving women a voice led to the development of an advocacy campaign to identify the needs of women. While the last workshop was held in Polokwane in the Limpopo Province on 16 September 2011 this is certainly not the end of the road as the project will be taken across our borders to Lesotho, Mozambique and Malawi. Back to top

28th Annual Pacific Rim International Conference on Disability & Diversity “Living to Our Complete Potential” March 26 & 27, 2012 Hawaii Convention Center 1801 Kalakaua Avenue Honolulu, HI 96815-1513 The 28th Annual Pacific Rim International Conference on Disability and Diversity (formerly called the Pacific Rim International Conference on Disabilities) 2012 Living to our Complete Potential March 26th & 27th at the Hawaii Convention Center in Honolulu. PacRim is a top rated international educational conference for and from persons with disabilities, family members, researchers, service providers, policymakers, community leaders, advocates, and internationally recognized professionals.. Become a part of a historic change! Please contact: prinfo@hawaii.edu (808)956-7539 www.pacrim.hawaii.edu Back to top

Jubilee Photo Competition: Announcing the Winners Dear Friends More than 300 artistic photographs were submitted to the IBE Golden Jubilee Photography Competition, giving a very difficult task to members of the judging panel, who spent a considerable amount of time in choosing the winners. One of the main criteria for the award was to express epilepsy through a photographic image. The following photographs were the worthy winners: CAMERA PHOTOS: First Prize: US$3,000 Thilde Mørup Christensen Denmark Title: Pieces Second Prize: US$2,000 Anders Nilsson Sweden Title: Seizure Joint Third Prize: US$500 James Leahy Ireland Title: Fear of it all Joint Third Prize: US$500 Kai Löffelbein Germany Title: Look MOBILE PHONE CATEGORY: First Prize: US$500 Lotta Hoffback-Kaljo Sweden Title: Light in the Tunnel Second Prize: US$300 Sherwyn Vargas Philippines Title: My world and me Third Prize: US$200 Patricia Simpson-Green USA Title: 1st known Grand Mal at 60 miles per hour The judging panel extends its thanks to all those who took part in the competition. All photographs submitted to the competition are now available to view on a special gallery on the website at www.ibe-epilepsy.org/taskforces/jubilee-photo-competition. Postcards of the winning four photographs in the camera category were available, free of charge, on the IBE stand in the Exhibition Hall during the 29th International Epilepsy Congress, Rome – 28th August – 1st September 2011. Judging panel: Denise Chapman, Shunglon Lai, Susanne Lund, Peter Murphy, Simon Shorvon, Tatsuya Tanaka and Sam Wiebe. Back to top

Assistance required sourcing Candidates with Disabilities Good day, I am currently seeking persons with disabilities to participate in a one year learnership in the banking and microfinance sector. A monthly allowance will be paid to the successful applicants. Important criteria for the applicants is a completed 3 year tertiary qualification OR valid matric certificate. Must be credit and criminal clear. Immediately available with no pending work or tertiary obligations. Interested candidates can visit our website, www.kelly.co.za and download an application. Or contact me directly for a form to be faxed or e-mailed to them. Please contact me should you require any further information. Your assistance will be greatly appreciated. Kind Regards Gail Pieterse Project Manager:  BankSeta Tel : +27 11 269 8863 Cel : 082 561 7266 Fax : 088 1700 158 gail.pieterse@kelly.co.za www.kelly.co.za Back to top

Launch of SADDT National Learnerships Programme The SADDT’s National Learnerships Programme with the W&RSETA has been launched!  The historical event took place at the Indaba Hotel, Fourways, on 23 May 2011.  This truly festive occasion was attended by the Minister of Women, Children and People with Disabilities, Lulu Xingwana, as well as the Deputy Ministers of Higher Education and Training, Professor Hlengiwe Mkize, and of Public Works, Henrietta Bogopane-Zulu, respectively.  Senior executives of four major retail chains, SADDT and SETA chairpersons and staff and a variety of other guests were present.  The programme featured many speakers and several memorable highlights. In welcoming the guests, the SADDT CEO, Thulani Tshabalala, set the scene by placing the Learnerships Programme within the context of the “Year of Job Creation” announced by President Zuma in his recent State of the Nation Address.  Even though South Africa has advanced from a medical model of disability to the more progressive social model, the statistics on disability paint a bleak picture, as pointed out by Thulani, with 30% of disabled people having no education at all and with just 3% having a post-matric qualification.  The National Learnerships Programme represented a significant response to this situation and the immense need was vividly illustrated by the fact that in just two weeks since the first advertisement of the programme, the Trust had received 200 firm applications plus 600 requests for application forms. In his address, the CEO of the W&RSETA, Joel Dikgole traced the path taken in the growing relationship between his SETA and the SADDT which started in 2008 with a bold first step:  A hundred Pre-Learnerships were offered to persons with disabilities in Gauteng.  This was followed in 2009 and 2010 by 100 full L2 Learnerships in which disabled learners had achieved an exceptionally high graduation rate.  Along the way the example set by the W&RSETA has been emulated by several other training authorities.  And now the time has come to roll out the programme on a national scale, offering no less than 404 learnerships in five provinces. Learner testimonies followed and provided some of the most memorable moments of the launch. Nokuthula Mngomezulu completed a L2 Learnership with the W&RSETA and is employed as a receptionist.  She praised the Lord for the opportunity she had been given and felt at ease with her disability.  “I am what I am.  Good things come.  You must never give up!” she said.  Dennilton Datoba said he was proud of his achievements and loved his job as a storeman.  Too often the community regarded disabled people as failures, but he had had a chance to prove them wrong.  His advice to others?  “When you are given an opportunity, grab it with both hands!” A report on the study visit to the UK and Spain was officially handed over to Minister Xingwana by Dr Hennie Zwarts of the W&RSETA who had been a member of the study delegation.  The purpose had been to gather information on employment equity and job creation for persons with disabilities in the countries visited.  In her response, Minister Xingwana said that progress was being made on many fronts, but that barriers and discriminatory attitudes persisted.  Government’s failure to advance towards the 2% target for the employment equity of disabled people was cause for concern, the current level in the public sector being just 0.6%.  The Department of Women, Children and People with Disabilities was, however, strengthening its monitoring capacity to hold all departments and sectors of government accountable for this target. Turning to the study report, the Minister mentioned each of the recommendations in turn:  Provision of a comprehensive and integrated package of government employment services;  Establishment of a government-supported agency responsible for the co-ordination and delivery of employment services;  Creation of a sustainable revenue base;  Government support for an Employers Forum on Disability;  Promotion of research and development; and  Benchmarking of services. Minister Xingwana said she accepted these recommendations which would be integrated into an overall government strategy on employment services.  The SADDT would be consulted in the matter and asked to partner with Government in the implementation of the recommendations. The Deputy Ministers of Higher Education and Training and of Public Works in turn delivered congratulatory messages, after which senior executives of several retail chains spoke of the positive effect of disability learnerships on their businesses.  In conclusion, David Smollan of the Smollan Group captured the spirit of the occasion with some inspiring words.  He said that in the current environment it was extremely difficult to create a single job and that it was even more difficult to create a job for a disabled person.  For this reason he was proud and grateful to be a participant in this new venture and he pledged his company to an increased intake of disabled learners.  “In the agricultural industry,” he finally said, “there is a saying that if fruit struggles it will develop character and you will taste it in the fruit.  We believe our disabled learners display the same character due to the struggle they have had in their lives.” Back to top

Western Cape Branch News AGM – 25 August 2011 Epilepsy South Africa Western Cape Branch celebrated its AGM on Thursday 25 August 2011. The meeting was well attended by our members, representatives of various non profit organisations and other businesses. Before the meeting our new furniture range was displayed. Much interest was shown by all the attendees. The meeting began with the first guest speaker, Rustim Ariefdien a disability consultant, who unpacked the business case and highlighted the challenges that NGO’s face, but also the ways in which businesses can utilise our services in a mutually beneficial relationship. Ruth Nugent, our senior social worker then spoke about disability sensitisation and how to create a “disability conscious organisation” The information was well received by all. Our Director, Wendy Nefdt, excitedly announced that the organisation recruited three new board members and two advisors to the Board. We certainly look forward to working with them as they share their skills and time in order to add strategic direction and value to our programmes. As the theme for this year indicates, “moving with change”, the organisation continues to move from strength to strength even when faced with adversity. Ms. Sharon Follentine from Department of Social Development head office did the thanks and closure and in her speech she also highlighted that Epilepsy South Africa has shown great strength through the team work that happens in this organisation. At this point, much to the Directors surprise, the Social Work Manager, Anthea, took the opportunity, on behalf of the staff, to acknowledge and thank Wendy for all her hard work and her commitment to the organisation over the past 11 years.  Wendy was extremely moved by this gesture and thanked everyone in return. A Photographic Expressions Project “My life through a lens” Epilepsy South Africa has begun the process of using art as part of our disability sensitization and integration programme. At this point in time we are engaging 15 learners with disabilities and those without in a photographic project with Frank Joubert School of Art.  The aim of the project is to capture a day in a young person life which tells of their challenges, interests, frustrations, joys and aspirations. The difference with this project is that learners selected will be learners with disabilities and learners without. Together the learners will capture their individual lives and have an opportunity to examine their similarities and differences through a lens of camera. The photographic project had its first workshop on the 27th August 2011. Ten children participated and in the workshop, learners learnt how to use a camera, how to take photos and then were given a disposable camera to take photographs depicting their life. Most importantly the learners interacted meaningfully with each other and helped each other understand the process of using the camera, the theory behind taking photographs, and unpacking the theme of the project. The cameras will be collected on the 5th September and the photos will be developed. In the second workshop which will be held on the 10th September 2011 the learners will be guided by the art teacher from Frank Joubert on creating a photographic essay/story with their photographs. Watch this space to see how the next workshop unfolds! Back to top

Casual Day Congratulations to all the Rock Idols of 2 September Once again, South Africans showed solidarity with persons with disabilities through their remarkable support for Casual Day 2011.  Schools, companies and individuals across the country revealed their Rock Star Alter Ego’s at this year’s Casual Day 2011 to participate in the largest fundraising project for persons with disabilities in Southern Africa. The FUN-factor in this nationwide campaign, themed “Worn to be Wild” was evident as we saw people dress up as different rock-personalities such as Lady Gaga, Ray Charles, Avril Lavigne and Ozzy Osbourne. With a decidedly Rock-Idols feel, the winners of Casual Day 2011 are:  People with disabilities!  To all those who supported Epilepsy South Africa and people with epilepsy and other disabilities through Casual Day, we say a very big THANK YOU! Wouldn’t it be fantastic if this initiative could run continuously throughout the year?  However, looking at the amount of work that the Casual Day team puts in, a year is barely enough time to launch the next Casual Day!! The reality is that the need of the vulnerable people in our country is daily rather than annually – their obstacles to overcome unremitting…  How do we provide services on a constant basis when Casual Day comes only once a year? At last! The solution to sustainable service delivery After long deliberation, hard work and downright struggling, the National Office has at long last found the answer (the very obvious one, I must say!) to real, sustainable service delivery! Yes, we have been able to activate our very own debit order donation system that we can process in-house!  With this type of monthly support, we will be able to sustain our services and, who knows (if it really goes well) even expand! It is that easy, but we need your help; even if it is with your debit order of R20 or R50.  Remember that every little bit makes that little bit of extra difference that you are making in the life of a vulnerable person.  Please contact us at 021 595 4900 or fundraising.no@epilepsy.org.za to receive your debit order form and become part of our culture of change; the culture of changing obstacles into true potential.  Who will be the first one to fill out their form..? Back to top

My inspiration to start Living with Heart. My name is Sherri and I am a mommy to three little girls, Kayla, Lorelai and Emilee. My youngest little girl, Emilee, was born premature and had to be in the neonatal intensive care unit (NICU) for a week.  However, she finally came home and was just adorable. Her sisters loved her the minute they laid eyes on her. I didn’t have a difficult pregnancy, it was just a busy one, as the older two still needed a lot of my attention. On the 14th of February 2010 I started feeling some contractions. I chatted on Skype with my best friend Lynette and on my cell phone with my other best friend Tash, and we timed my contractions. They were getting closer together so I phoned the hospital. I was told to go for a warm bath and see if that eased the contractions.  It didn’t. As my contractions were now three minutes apart, Lynette and Robin came to look after my other two kids while my husband and I headed off to the hospital. I was put on the foetal monitor and it was confirmed that I was in labour. Since I had Caesarean Sections with my other two, it was decided that we should try to stop labour. My gynaecologist worked very hard to make sure Emilee stayed in for as long as possible without trauma, and I was given steroid injections to mature her lungs.  But on Friday the 19th of February they decided it was best for Emilee not to wait any longer and she was born weighing 2.5kgs. She had some respiratory distress and went Into NICU. After being home for about 10 days little Emilee got flu, so she went to the paediatrician and was put on antibiotics. Overnight, however, she got worse and it turned out that she had pneumonia.  We had to go back to hospital. It was heartbreaking seeing her In the paediatric ward with feeding tubes and hooked up to machines.  She also had to have physiotherapy twice a day.  During one of these sessions we noticed that her leg jerked strangely, but we were not too concerned.  Ten days later we were discharged and went back home. Not long after this I noticed that Emilee was very lethargic and her jerks were coming more frequent.  I phoned our paediatrician who met us at the hospital once again.  This time she was diagnosed with viral meningitis.  After several tests and long days, she was tested for epilepsy. We were discharged again and during her check-up we were told that the results had returned and it was confirmed that Emilee had epilepsy.  My heart sank!  My older brother had epilepsy and I knew his struggles and I just didn’t know how we were going to cope.  All I wanted to do was to fix it!  How can such a perfectly pink beautiful baby, my baby Emilee, have this?  I felt lost and my world crumbled as there was nothing I could do to make her better. She was put on medication and we were told to keep an eye on her.  She was first put on Phenobarbital and did well, but she still jerked a lot.  Topamax was added to her treatment, but while on it she stopped eating.  It was a struggle just to get her to drink 50mls of milk.  She lost weight and her growth was stunted.  She was weaned off Topamax and put onto Epilim and Phenobarbital.  Finally there was a glimmer of hope!  She was drinking, growing and doing well under the circumstances, until December 2010.  She started having seizures again.  Her eyes would roll back and the jerks were just unbearable.  We were once again admitted for tests and her medication was adjusted.  Some days went well and others not.  It was a roller-coaster of emotions, sleepless nights and constant crying. In June 2011 her medication was changed once again. She is still on Epilim but Keppra has been added to her treatment.  While I hold my breath and “touch wood” so far things have been much better.  In July 2011 we have had only one seizure that I have seen which is remarkable compared to what it used to be.  I have my baby back!  She laughs, smiles, babbles and loves giving hugs and kisses.  It’s been a miraculous month. I would also like to take this opportunity to thank my family, my friends and Dr Naidoo and Dr Takoordeen and all the mommies on www.mommy.co.za for their support. I decided to start living with heart because every day I live with a child with epilepsy.  My heart breaks but my heart also smiles.  I have learnt to appreciate small things.  A simple “mama” with a big smile just makes my day.  I would love for parents who live each day with a child suffering from dread disease, illness, syndrome or other problems to connect with other parents going through similar trying times.  It’s important for all parents to know you’re not alone and our loved ones are in our hearts during the good times and the bad. With Heart Sherri- Lee Baker Back to top

People Find job creation initiative Peopleplus (a division of Talenger Holdings (Pty) Limited) has entered into a partnership with the Department of Labour in Gauteng for the launch of a job creation initiative – PeopleFind.  The pilot project was launched in the Ekurhuleni Metropolitan Municipality on 12 July 2011.  The pilot phase will cover the Alberton and Germiston Department of Labour offices and be rolled out to other areas within the Metro and nationally in a phased approach. The purpose of the initiative is to connect job seekers with potential employers by means of technology.  Job seekers can approach the Department of Labour offices (Alberton and Germiston) and have their details captured for them by trained employees of the Department and/or access the portal from any PC connected to the Internet on a self-help basis to upload their CV details on a central database. Business can upload unlimited vacancies and undertake as many searches of the database as required in search of staff.  All vacancies loaded are immediately available for viewing by individuals accessing the database. The site has full security protecting the identity of both individuals posting their CVs and businesses posting vacancies.  Access to details is protected by random codes generated by the system. To load your CV, place a vacancy or search the database pool go to http://www.peopleplus.co.za and click on PeopleFind. The job creation initiative is a FREE SERVICE to both unemployed people and businesses and was put together with the assistance of the Department of Labour, Mustek, Cell C, Talenger Holdings, Peopleplus and SECOB.  Businesses wishing to be part of the this initiative can contact Rodney de Villiers on (011) 615-2463 or email him at Rodney@talenger.com Back to top

My rose bud with lissencephaly My beautiful red rose was born on 23 January 2007 by an emergency C-section. Two weeks early because of complications with the umbilical cord. Weighing only 2.626 kg’s the first thing that went through my mind when holding her was “How am I ever going to get her big?” Her tiny face was identical to her older sister. Whilst bonding with Rilandi the paediatrician mentioned that she was amazed that Rilandi’s hand palms had only a few minor lines. Rilandi’s Agpar count was 8/10 and later 9/10. The next morning the paediatrician did the routine check on Rilandi and mentioned that I should take good care with her since ‘red heads’ tend to get bugs and illnesses very easily. I immediately asked God to cancel the negative words spoken on my new born. Rilandi wasso perfect as she was lying in the crib. As if she then already knew what a cute little girl she’s going to be. She took to breast feeding without any hassle! At the age of four month’s Rilandi was admitted with the Rota-virus. I could not leave my tiny rose alone at hospital and slept next to her bed for a week. At last we went home, just to come back very unexpectedly the next day for the RS virus. Another 8 days admitted and two hourly nebulised for the first three days, again we went home for a short stay. We came back to hospital the next day with Bronchiolitis! Rilandi was really suffering this time round. She had to be tube fed. It broke my heart to see my little rose so sick and helpless.Back home again after a terrifying 10days we were so relieved to be home. A few days later myself and Klarien, now 17yrs noticed Rilandi made strange eye movements, as if she wanted to sneeze. At first I thought something was irritating her nose. I recorded the scene on my cell phone, just in case. Rilandi got middle ear infection a few weeks later. We took her to the paediatrician, due to our concern for the extremely high fever. I also showed the video clip to the paediatrician and he was a bit concerned and said he’ll arrange for an EEG whilst she’s in hospital for the ‘grommet’ operation. He mentioned that it does not seem to be a normal reaction. I was devastated by his words. But I prayed to God to not let anything be wrong with our little girl. The EEG doctor did not make any eye contact with me during the EEG and afterwards I tried to get more info from him, but he did not want to discuss his findings with me. He only mentioned that the EEG showed that there is definitely abnormal brain activity. Rilandi was booked for an MMR. I thought by now, I’m going to have a breakdown, this can’t be true!The brain scan confirmed West Syndrome and she started off getting Hypsarrythmia with Infantile Spasms; we had no idea what this was. The paediatricians were waiting for us to return from the MMR procedure. When we entered her room she had the Encyclopaedias’ and a few medical books open in front of her on the desk. She welcomed us with a hug and said she is so sorry to bring us the bad news but this day is the funeral of our baby daughter. She said “I’m taking away your daughter from you today; she will never marry, have children, go to a school or be like other kids. She will always be a baby” I was shuttered by her words. I cried like never before. My heart broke into pieces. She also mentioned that there are ‘homes’ for kids like this and we might consider putting Rilandi in a home where she will be happy! Still I had no idea what all these medical terms meant. To me it was words without any meaning, hard words explained in the harshest words any one can imagine! The next day we had an appointment with the Paediatric Neurologist. I had no tears left. The doctor explained that Rilandi has an extremely rare brain condition named “Lissencephaly”. She comforted us by saying Rilandi’s brain stem is normal, the corpus colossus and  Rilandi had ‘curves’ on her brain unlike most of these cases who had a total smooth brain. Rilandi was on cortisone injections for the next ten days. I went home for the first time since Rilandi was admitted. I was exhausted. I had no feelings left. When I looked at Rilandi I could not imagine all the things the doctor said about her. I started praying day and night against all the negative words spoken about my little rose. I pleaded to God to cancel all negative thoughts and words spoken against her. Klarien came to me and asked me to promise that we will not treat Rilandi any different from another child. She asked me that we treat her little sister as a normal child with special needs. We were both committed in giving the best to our little rose. We immediately started with baby massaging. This is still done every night after her bath. She enjoys it, and tickling is obviously part of this game. God has sent her a wonderful new daddy who does not have any kids of his own and loves Rilandi as if she were his own blood. God is great!Rilandi was send to hospital again to make sure that the food ends up where it’s supposed to and not in the lungs… which might be the reason for her bad chest and not gaining very much weight. Her daddy was at her side while the tube was inserted through her tiny nose into her stomach. What a relief when the tube was removed the next day. Myself and Kobus were at her side trying to comfort her and giving love to make the eina’s go. Her new daddy and also her hero took her to choose a frame for her glasses. Just like any other little girl she chose a Barbie frame. The manufacturing company sponsored Rilandi’s frame which was a great relief, since her medical costs were getting the best of my salary. We have appointed a full time nanny for Rilandi who exercises and plays with Rilandi all day long. They are a great team and understand each other. The seizures stopped for more than two years after she was treated with cortisone and the Sabril medication. Doctors were very negative on any progress. We were advised not to ‘waste’ money on treatments and therapy’s we should just accept the fact. We accepted but also decided not to just let go. Rilandi now has good neck control and is rolling over. Rilandi has special custom made standing frame and splints to correct and encourage her standing and ankles. She now attempts to crawl. Rilandi has her own lovely personality and will definitely show you when she is not happy with a wet nappy or when she’s thirsty she will lick her lips or click with her tongue. She understands when we ask her something and talks to us in her own ‘special’ language.She now starts to put sweets in her mouth after daddy taught her how to suck her thumb, and drinks from a cup, with help. Rilandi has progressed, and all the glory to God! Rilandi is doing physiotherapy and hydrotherapy weekly and horse riding also bi-weekly.Unfortunately the seizures came back in December 2010.  Rilandi’s daily highlight is when her daddy takes her in his arms after her bath at night, she ignores everything and everyone around her, she will look at daddy and laughs when he coughs, if he doesn’t make eye contact she will look at him and start ‘talking’ to him. Klarien must sing to her every day and her favourite song is: ‘Don’t let anyone tell you that you’re not strong enough, don’t give up, there’s nothing wrong with just being yourself, that’s more than enough”. When we go to bed at night Rilandi has her own private time with God. I’ll sing her, her ‘Liewe Jesus-songs” while doing movements with her hands. You should also not attempt to sing these songs during the day, you will soon realise that she’s not willing to go to bed, that is bed time songs only! I would like to encourage parents in my position to ensure they know the reason for a cerebral palsy prognosis. We should not just accept when your child has been diagnosed with a brain condition. Find out the reason behind the prognosis. Work with your child, love him/her unconditionally. Communicate a lot, repeat, repeat, repeat everything you do or say to your child might take 100 times longer for your child to understand. But he/she will eventually, in their own special way they know what is going on around them. God chose us, I did not want to be chosen for this big task, but God wanted to choose me. I did not want to be a special mom… but God wanted me to be one. Why are we chosen for this? Because God only trusts certain special people with special children. Everything about an ‘any-cephally’ child is special. But the facial features all seem to be like that of an angel. I would love to start a support group for any-cephally children in SA. It seems like the only support groups for this condition are overseas. She is currently treated by Prof Rodda at Baragwannath. Back to top

Epilepsy Facts Corner Research: Schizophrenia and epilepsy have ‘strong link’ – BBC NEWS HEALTH (19 September 2011) People with schizophrenia are six times more likely to develop epilepsy, says a study which finds a strong relationship between the two diseases.  Writing in Epilepsia, researchers in Taiwan say this could be due to genetic, neurobiological or environmental factors. The study followed around 16,000 patients with epilepsy and schizophrenia between 1999 and 2008. An epilepsy expert says it is an interesting and convincing study.  The study used data from the Taiwan National Health Insurance database and was led by researchers from the China Medical University Hospital in Taichung.  They identified 5,195 patients with schizophrenia and 11,527 patients with epilepsy who were diagnosed during the nine years period. These groups of patients were compared to groups of the same sex and age who did not have either epilepsy or schizophrenia.  The findings show that the incidence of epilepsy was 6.99 per 1,000 person-years in the schizophrenia patient group compared to 1.19 in the non-schizophrenia group. The incidence of schizophrenia was 3.53 per 1,000 person-years for patients with epilepsy compared to 0.46 in the non-epilepsy group. Previous studies had suggested a prevalence of psychosis among epilepsy patients. Two-way relationship Researchers in this study also found that schizophrenia levels were slightly higher in men with epilepsy than in women with the disease. Dr I-Ching Chou, associate professor with the China Medical University in Taichung inTaiwan, said: “Our research results show a strong bidirectional relation between schizophrenia and epilepsy.  “This relationship may be due to common pathogenesis in these diseases such as genetic susceptibility and environmental factors, but further investigation of the pathological mechanisms are needed.” Dr Manny Bagary, consultant neuropsychiatrist in Birmingham, said it was a “very interesting” study. “We have been aware that epilepsy sufferers seem to be have an increased risk of psychosis but this is the first convincing study to suggest that people with schizophrenia could also be at risk of developing epilepsy, suggesting a bidirectional relationship has been found between depression and epilepsy”. “The association may be due to a common environmental factors such as traumatic brain injury or brain haemorrhage in utero. Alternatively, a genetic association may be relevant such as LGI1 or CNTNAP2 genes which have been associated with seizures and psychosis.”  “However, there may be some questions to ask about the reliability of the schizophrenia and epilepsy diagnoses in the study because it is a retrospective health register study and both conditions can be difficult to diagnose. “Nevertheless, this study will serve to guide further research into the relationship between epilepsy and psychosis.”

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