One month later, Nancy Lamwaka registers some “Improvement”

Nearly two months ago, Nancy Lamwaka, looked fragile, with little hope of ever getting better as the world searched in vain for a cure to Nodding Disease.

Nancy was hopeless, tied for over 13hours on a tree trunk and lived an inhuman life as  Echwalu Photography  reported then (Nodding Victim: Tormented 12-year-old girl lives like pigs)

Her condition was not helped with the fact that Uganda had no definite answers to her cause. And so did the Centre for Disease Control (CDC) team in Atlanta, which is possibly, the world’s center of medical research grappled with samples in their labs hoping to find remedy for the disease which continued to cause mayhem to the children of northern Uganda.

Like Scott Dowell, director of the division of global disease detection and emergency response of the Centers for Disease Control would say in a February media brief at the US mission Uganda; “We have a long list of things that are not causing nodding disease. We still don’t have a definitive cause.”

In that confusion, desperate parents prescribed anything they thought would better their children, from random drugs to shroud local herbs.

Frank Odongokara, Nancy’s father had not lost hope though.  He kept on believing in a miracle to save his daughter.

Today, she’s registered some progress. My first impression on seeing her only for the second time in a month was her appetite. It had remarkably improved. Closely seated in a neat circle of siblings, she opened ground nut shells while easily eating the seeds without getting attacked by the nodding syndrome.

She’s irregularly tied on the tree and can now walk freely though under close guard of an adult while her then rotting fingers are slowly healing. Her previously pale skin is getting smooth today.

Nancy’s aggressive use of sign language has also impressed her parents. Take an example of standing next to a pot if she needs drinking water and stretching her hand for food whenever she’s hungry.

“There is some improvement from the time Medical Team International came with some drugs for her. The doctors have been giving us a variety of drugs (tablets) to experiment. Depending on which one works, we are going to continue like that.

“She’s still attacked by the nodding syndrome. She does not miss a day but the impact is no longer as serious as it used to be. Today she nodes maybe twice a day, as opposed to about 10 times she used to be attacked,” Odongkara says, seated under a tree his daughter used to be tied.

Just like Odongkara, the mother, Grace Akumu, is happy to see these changes but does not want to be carried away as long as the definite cure remains a mystery.

“It really feels good to see my daughter improve but her mental status continues to worry me. She still cannot talk, rarely response to orders, cannot do anything constructive and always looked disturbed that’s why I still tie her whenever am living her alone home,” Grace Akumu said.

Part of this progress is a result of the ministry of health opening up three nodding disease treatment and screening centers’ in the northern Ugandan districts of Kitgum, Pader and Lamwo, where the illness has been identified.

For the Odongkara family, any progress, however meager is good for now considering the fact that there is still no cure for the nodding disease.

Thank you so much Sussane Possing for them poem. I hope she will get to read and understand it one day.And a thank you, goes to all who sent me with comfort messages.

18 thoughts on “One month later, Nancy Lamwaka registers some “Improvement”

  1. I’m glad your improvement, I look after your last post, I contact the ONG Doctors Without Borders (MSF), but they told me they could do nothing for now, anyway you pass your data. Good luck and I congratulate you on your spectacular shots you manage in a corner of the world where few can reach.

    • Thank you so much for your attempt to reach Doctors Without Borders. An attempt is good enough. Its responsibility enough. Just like i traveled all the way to document this little girl, you did your part by contacting DWBs. We keep hoping Nancy improves even without a definite cure for Nodding disease. Thanks to the publicity the decease has got, respective organs are doing what they can to arrest it..

  2. Ciao, great news, so very glad the little girl is improving, great shots, well done for highlighting this ‘nodding ‘ affliction. Lynne

  3. I was so joyful to come home and find an email with this news in it Edward. I know in reality these are small steps but they signal hope and for her parents that must truly feel like a giant step when there was so little before.
    Importantly this disease is getting the attention that it should from people who are in a position to find a reason for this disorder and then hopefully a way of preventing it.
    Thank you so much for giving us this update.

  4. Pingback: Nodding Disease: Success stories under difficult circumstances

  5. Wow, it’s really nice to hear that she’s feeling better! Even though she has a long way to go, we should never underestimate the first small steps and how much they can mean for a person affected by something as terrible and unfortunate as Nancy is. I keep my fingers crossed that the improvement will continue and she will get even better. Thank you so much for the update! If there is anything I can do, or anybody that I could contact, that may in one way or another help her and her family out, let me know. It would be an honour to be able to help in any way possible.

  6. well,
    ts just art in photography ,the subject captures me and am lost ,looking at these images
    thinking about the innocent spirit of a child in the pictures,
    thanks artist behind the lens capturing moments!
    ts a great archive of its kind , i like your blog too ts awesome .neva stop !!
    One Tibirusya

  7. Pingback: When Nothing Can Be Done | TCON : The Children of the Nile

  8. Pingback: Noowah — Part two: Ugandan family copes with Nodding Disease

  9. Just want to say your article is as astounding. The clearness to your submit is just cool and i could suppose you are a professional on this subject. Well together with your permission let me to grasp your feed to stay up to date with approaching post. Thanks one million and please carry on the rewarding work.

    • Thank you Kimberly, I am planning to revisit the nodding syndrome all together. Thank you doing amazing work too. I hope we shall work together sometime in the future

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