The week that I will never forget especially for the #disability movement in kenya. 1. #parasports beeing burried by the hunchos in the sports industry. #sports council beeing involved. #no apologies to make on this. #accepted and moved on. 2. #happy birthday to myself as I turn 17 years of being blind AKA visually impaired. #thanks to God for the far he has brought me #prowd to be who I am since with his own image and likeness am a living example that blindness should not deny you to live life to the fullest. #I will never give up even if they try to bring me down. If you may like call me @mpofu namba 1 #katu sitetereki wala kujinadi. I don’t need a school to explain what it has been being blind #the only thing I should get to know or discover is the color identify for human beeings. Would be glad technology if you can solve this mystery. #i won’t mind birthday gifts! 3. Meeting a professor who became blind like me one year ago and is ready to move on! 4. Standard marathon fiasco where young talent Tony from Joytown school shortchanged 5. Standard marathon where they talk of “seeing is believing” while we don’t’t have the race for the blind 6. The whieelchair winner at the standard marathon given 12 times less cash award during the standard marathon. ! 7. Meeting #jane kogi for the first time. 8. sumptious lunch from a friend of mine during my birthday. 9. Amputee football not being funded for the trip to mexco world cup. 10. #ncpwd with the able leadership of #david ole sankoc promising strict measures for organizations and individuals misusing funds and taking advantage of persons with disabilities. “ll deal ruthlessly to any organization(s) or individuals who have formed a deep rooted cartel of corruption in the disability sector..... their days are numbered. this is not a threat already EACC is investigating APDK especially in relation to monies they have been receiving from NCPWD for---------“ 11. Talking to a newly blinded police man cc 12. #faith c muthoni 13. this humble letter from @monica binti ngere Dear President Kenyatta, Greetings, I have contemplated sending this a properly addressed official letter but then realized it might never cut through the bureaucratic red tape and since you are a digital president allow me to address on this forum. I see you as a president that has a heart for his people , I have observed as you come to aid those that lack school fees, those that lack finances for medical treatment and appreciate our struggling, talented youth. My name is Monica Ngere and I was a mother to a child that suffered from cerebral palsy, I say ‘was’ because he has since left to be with his maker this August, his name Baraka. Mr. President I write this on behalf of all the parents that have children that have cerebral palsy, a forgotten lot. Like any other expectant parent I had gentle hopes of seeing a newborn who is healthy, cute , what they call a bouncing baby boy. My hopes were dashed when he was born with severe eye and leg defects, at 6 days old went into a comma and despite it all was diagnosed with cerebral palsy when the good doctors realized he was not hitting his milestones like other kids his age. Sir thus became the beginning an arduous and heart wrenching two year journey that would make me cross paths with many parents with kids like Baraka, mostly single mothers who their partners could not handle the heat of having a child who is disabled or has special needs. Spineless characters these ones are! As is characteristic of the condition most of these children are unable to develop on their own without various therapies to help restore motor skills and functions lost when the brain damage occurs hence the cerebral palsy. It is common place to hear a child is attending physiotherapy to help them gain neck control, strengthen their spine, strengthen muscles that aid walking , sitting, grabbing objects, speech therapy, nutritional therapy to aid nutrition as they have poor eating habits or cannot add weight without extra help. It is also not unheard of like in Baraka’s case for them to need treatment for other birth defects e.g My son had a condition called congenital talipes or clubfoot (street lingo) thus needed treatment to rectify legs that are deformed at birth where the soles turned inwards hence if not treated the child will never walk at all or will have a limping gait. It is this journey that made me take a walk through our public hospitals seeking the requisite therapy, Kenyatta National Hospital , Thika Level Five hospital, Pumwani Maternity Hospital (which began the clubfoot treatment when he was barely three weeks old). Sir something must be done, Pumwani offer the clubfoot treatment for free courtesy of an international organization known as Bethany Kids, Thika Hospital you pay a token fee but the place is ill equipped to offer the full extent of the therapies required, their nutritional support was however free courtesy of yet another international organization that would supply special porridge flour, formula milk, a nutritious peanut butter paste etc. However the hospital is stretched personnel wise and we would spend the entire day just to be attended to. Kenyatta….I pause to think ……..money, money , money and more money to pay for each clinic that offered the various therapies. Do not get me wrong they still offer cheaper therapy options compared to private hospitals but even the hospital needs more modern equipment. See Mr. President, most parents that I met in those clinics like myself had a financial challenge that I can only explain as sad. A parent with such a child is left alone by a spineless partner, she/he cannot look for a 8 to 5 job as the child is not the kind you leave with a house help. The therapies, special equipment and diets needed eat into the monies that would otherwise even help such a parent set up a small business. I will give an example of a parent who has a child has clubfoot and cerebral palsy. The child goes through a treatment known as ponsetti where the feet are taken through serial casting(like the ones put on people with broken limbs), the casts are changed weekly. Part of the special conditions in successful treatment is that the cast must not get wet so a struggling parent cannot use clothe/reusable diapers, Sir do you know the cost of a pack of pampers? This same parent uses fare to and fro the hospital and woe unto her if she is attending the orthopedic clinic 46 at Kenyatta which charges one thousand shillings (kshs.1000) to recast the two legs every week. A child might need 8, 10 or even 12 casts depending on the severity of the deformity and how well the feet respond to the manipulation. Children with cerebral palsy often suffer from a muscle weakness just like my son, the condition keeps recurring , more casts are needed or even a surgery known as tenotomy. Now count the other therapies the child needs, physiotherapy costs between kshs 500 and 1000. Put this as a weekly cost and we are looking at an amount such as kshs. 4000 minimum to kshs 6000 per week for a parent who has no income. I mentioned special equipment, some will be prescribed for special chairs to help them sit, move around. The chair is known as a nanny chair(street lingo) , a manufactured one costs around kshs. 30, 000 and that’s a subsidized rate from an association whose acronyms are APDK. Sometimes the organization will have donations of the chairs, but well there is a waiting list. Most parents would then alternatively pay a carpenter a tidy sum of Kshs. 3000. Sir I am underestimating the costs involved in getting these children the quality treatment to lead a semblance of a normal life. I have to admit I was among the lucky ones that albeit got support from her family and friends. We did not lack the money for the therapy or treatment per se . I saw firsthand how therapy helps, in his last days on earth just as he was turning two he finally sat, he chuckled happily and he grabbed things around him . Others are not so lucky. Some would abruptly disappear from the clinics and follow ups done would reveal they could simply not afford the equipment and treatment. The emotional weight the parents carry are enormous, I was there and no one ever thought of me, ever prepared me for the things my son would go through and how society would deal with the situation. Sir, I have mentioned some spineless fathers, in a few instances mothers would abandon the children; it was not uncommon to meet an elderly grandparent attending the clinics with the grandchild with cerebral palsy. Sir, the society judges, it laughs at the parents of the children. I heard with my own ears someone say I was cursed, “kwenyu nyinyi ni wachawi”, you practice witchcraft, you have sacrificed that boy and this story was not unique to me only. Sir, the parents have to deal with awkward stares of the society when that neck is too jelly like, when that child has weird walking styles, when that child is of talking age and only laughs sheepishly and shrieks loudly! There is no free professional counseling ever offered to their parents or guardians. These parents and guardians suffer psychologically. We learnt to depend on each other while seated in the benches awaiting our turn or sympathetic medic who would say a few encouraging words. Wonderful doctors and nurses , therapists who were offered us hope, God bless them by the way. I am sure you have come across news items of parents who lock up their disabled children, they cannot afford the weird societal reactions, they cannot afford to hire help to tend to them, they have to go look for jobs or conduct business to be able to afford the therapy. I am in no way supporting this action or excusing those that just refuse to accept their child’s condition and cruelly lock them up in inhumane conditions like in goat shelters. Far from it, I am saying sometimes it seems the only possible thing to do. Sir I have to clarify, I was proud of my boy, a fighter par excellence and never hid him or his condition from those that dared to ask. I took him everywhere I deemed necessary to get him the needed help, I was lucky that for some few months my mother took him to my rural home in Thika so that I could work to pay for his therapy. I however worked for less than five months as he was constantly hospitalized and could concentrate at work. I was lucky that in my rejection by his father’s family we gained acceptance, love and the support of my immediate family and friends. Your excellency, this is not a pity party for my loss or my journey , Sir this a call to action to remember this forgotten lot that continues to suffer. This is a call that you have the power to equip the Public hospitals and or help subsidize the special equipment required, that with just as much as a promise you can help a child access the treatment for free , that Sir with the power you wield and the merciful heart you have demonstrated you can help the parents access the necessary psycho-social support they need. Sir I know you have a lot in your hands but I beg that in that very busy schedule you remember this forgotten lot not for my sake as my son’s journey ended but their sake. Sir the journey of my boy may have ended, but for many others born daily with or develop cerebral palsy it has just started, for many more others it has stagnated due to the challenges in treating this condition. Cerebral palsy maybe not curable as malaria is but the therapy helps in getting the children to live as far as possible a dignified and normal life. Put a smile of the faces of these children and their parents/guardians, help them live as they really should. If mine is ambitious, start the process for the benefit of future generations, we need a policy at least that will perhaps one day be fully implemented. Finally Sir, when Baraka passed on I told his seven year old sister that the brother has gone to be an angel to watch over kids like him, those that developed slowly, those that had funny movements and those who need to go to see doctors all the time. Sir, help me not become a liar, let this one boy’s story start a movement that helps children like him and truly let him be that angel that does watch over them. Be blessed if you even read this and be more blessed when you act on this issue. Thank you in advance. Uhuru KenyattaJomo GecagaDeputy President Press Service-DPPSFaith C. MuthoniLisa Muthoni PippenCherotich Carren KikiRonoh Kipchumba CornelyJoseph GithuMugo Wa WairimuJackson Muigai CfcNgugi IsaacKamotho Ngûgî KîmaniStella MungaiNick MararoJeff Koinange Joy Doreen BiiraWanuna SophiaDennis ItumbiKevin OcharoDaniel KipchumbaDann MwangiOnyango Ochieng Jr.Irene Gatwiri Uhuru KenyattaJomo GecagaDeputy President Press Service-DPPSFaith C. MuthoniLisa Muthoni PippenCherotich Carren KikiRonoh Kipchumba CornelyJoseph GithuMugo Wa WairimuJackson Muigai CfcNgugi IsaacKamotho Ngûgî KîmaniStella MungaiNick MararoJeff Koinange Joy Doreen BiiraWanuna SophiaDennis ItumbiKevin OcharoDaniel KipchumbaDann MwangiOnyango Ochieng Jr.Irene Gatwiri #pscu #faith C muthoni #cherotich carren kimkung #edith fortunate #tinah korosso #sophia wanuna #mzazi willy tuva #mwaura isaac #national council for persons with disabilities. #disability forum #william ndungu # Truphosa Jowi Adhiambo #kenya union for the blind #kofia mbaya #irene tersy #gabriel kaditi #rita johnson #disability forum #accessibility #ktnkenya #k24tv #citizentv #ntvkenya #kbctv #reality check #jaymo wa thika #citizenfmradio #merufmradio #the people #ntvkenya #thats life for us! #mugo wa wairimu #Jonathan Ameka Ndalo #James Smart #Eric Ngeno #Eric Muriuki Mbaka #Nimmz Pinchez #William Ndungu #DirectorPatrick Ngatia #Eric Oduor #Michael Kamau #James Kinyua Murithi #Irene Njenga #Nzau Ya Musau #Karaya Kevoh #Pope Phillip Koech #Wanjohi Githae #Gitari Liz #Wahome Thuku #Captn Collins Wanderi #Capital FM Kenya #gitahi ngunyi #KTN Kenya #Mukurima X Muriuki #Daudi Ule Mmoja #Cherotich Carren Kiki #Tsomnyazi Wa Nganga #Mule Martin, #Muthui Saiti, #Quincy Timberlake, Ruth-Queen Otieno, #Ruto Korir, George Omuok, Joyce Makena, Louis Agina, #Lucy Mworia, #Mugendi Njoki, #Joseph Lister Nyaringo, #Mwalimu Jefferson, #Geo Mutuku GK, #George Kenga, #Esther N Mulusa, #Rachel Catherine Eshiwani, #Latif Asman, #Faiza Ali, Rashid Nzambu, Benard Aswan, Abdul Muntaqim Maalim, #Abdalla Sheikh, #Stanslas Shinji Kagawa Stancy, #Stano Mastamind, #Mac Barbarian, #Samuel Mungathia, #Apologist Charles Praise Ameso, #Seth Angatia, #Gordon Teti, #Ramiey Bayaz Ramaa, #Hassan Abdi, #Vivian Achieng, #Vincent Wandera Wabwire, #Caroline Ruto, #Nur Cade, #Steve Waiganjo, #Steven Ba Stamford, #Suzzie Sue Korir,# Lilly Mwale, #MwamkoMpya WaKenya, #WanjikũRevolution Kenya #reality che#fridah monnah #steven k kewa #Zulekaha such #reby alitsi #wanja wamaina #uncrpd #disability # youtube/watch?v=O_dS2qHrbhIfeature=youtu.bea
Posted on: Fri, 31 Oct 2014 12:16:47 +0000
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