Yellow House

I thought I was strong! Not anymore
Martin Nafukho

Friday 13th April 2012.

It has been another happy week, and lots good things have happened ! Another occupational therapy student from Australia has joined our team on Placement. She got the nudge to come after reading an article by a peer that visited in 2009. The article spoke of an enriching experience of practice where you have to think outside the box to solve a myriad problems of health care provision in Kenya.

The week truly reflected the sentiment of Easter: renewed faith. The student is here and the rains have come to chase away the drought that seemed to extend beyond the time. The student was accompanied by her mother, a nurse specializing in epilepsy and movement disorders, added new impetus to our efforts of serving children with disabilities. Because of a looming airport strike the student’s mother had to cut short her stay to two days , but as a result of the limited time with us she offered to sponsor a child with a club foot, while her friend back in Australia committed to support a child Evan, who has had difficult raising boarding fee for basic primary education because the nearest school from which he could access free education had refused to accept him because of his lack of functional arms. Another burden carried off the shoulder of EARC and a poor father by a Yellow house friend.

The parent support group that has been making beaded products were also left smiling all the way to the bank as payment was received for the necklaces they recently completed. So far the group boasts sales of $900 after its inception just less than 5 months ago, not bad when you consider that many of these families still live on less that $1 a day, making payment for medical services and therapy for their special needs children near impossible.

Another surprise of Easter – we have finally managed to get 18 refurbished lap tops and the necessary accessories to Kenya. Unfortunately, they remain with FedEx as we look for the funds to pay the import taxes.

Fast forward to today and here we have Sylvia, the little angel who has been in Australia recently for extensive surgery for severe burn contractures which are the result of an accident she had 7 years ago. While she was recuperating she had been given this wonderful wheel chair she has not used since she came back as she has been using an artificial leg to get around. Sylvia and her family have known Ladin who has muscular dystrophy and also comes for therapy at the EARC and has been in progressive decline of function since 2008. Ladin is the first born of his teenage mother and despite all the efforts this young mother has been making to see doctors and come for therapy, there has been this fear and inability in all who care for him about his outcome of treatment.

Though Sylvia is not so well beyond wheel chair use as she is still in recovery stage, Sylvia’s family have decided to ease the pain and the struggle they have seen Ladin go through while he tries to get from one place to another and have donated Sylvia’s wheelchair to him.
The struggle to get around has been overwhelming Ladin. He first started to walk on tip toes, falling frequently. When he sought initial help someone thought he had convulsions and put him on anti epileptic medications! He sought another opinion and was put on ‘heat therapy’ twice a week for his weakening limbs. After the recent elections, the bus fares shot up and Ladin gave up the journeys to the general hospital and came to the Education Assessment Resource Center (EARC) in Mumias.

It turns out that we have become the place of last hope, due to the kind of empathy and unlimited support that children tend to be given by staff and volunteers that have been constant since 2009. At the EARC we were able to make a toilet seat for Ladin and another small seat he could use while playing as it had become apparent that he could not get up from floor level to standing position. Ladin’s mother had applied for wheel chair from local organization but it has not come through for over a year. This has restricted Ladin’s attendance at school as he is so heavy and his mother cannot carry him on her back to from school every day. Ladin can crawl around, but as a 10 year old , there are so many places he wishes he could go and so many friends he wants to see. Now this is where I feel courage which seems to fail me as a therapist , yes we know he is just a good child with this terminal thing (Muscular Dystrophy) but when the mother starts to talk about the things her Mumias slum neighbors have done to her boy , I see a tear dancing in her eye despite the buibui she is wearing. She talks about occasions neighbors have literally shut their doors and snatched away their children whenever Ladin happened by crawling to his friends. Just to play and be happy with them, to be with friends he has grown up with and gone to school with in his better days. They are fearful of his disability, fearful of this crawling boy they don’t understand, fearful of his illness. He has not been “sick” or hospitalized yet he seems to be weakening day by day.

It is at this point that my tear shows up too in my eye, here is a whole homogenous community casting aside their own. Except for Sylvia and her family who understand the heartache of a child with physical disabilities. Sylvia and her family know the day her artificial limb will have a problem she too will experience restricted movement. It has only been a few months since her surgery.

At eight years old, Sylvia spent many months curled up her in hut with flies as her friends, school completely inaccessible. “While I can still walk please accept my precious little wheel chair” Sylvia says to Ladin. “It is all my family and I can do to atone for the community sin of rejection to you because of disability.” At this moment I hide behind my camera pretending to be taking a photo, as Francis, Sylvia’s father goes through the motion of explaining how this wheel chair works. But behind the lens I am as helpless, I am not strong like Sylvia and her parents , I am not strong like Ladin’s mother to live in such neighborhood and see my child crawl back to me in tears and shame because his friends’ mothers shooed him away and shut their doors to keep him out and away from them.