About us
A Case for Support
The plight of families affected by Nodding Syndrome is hard to fathom and describe for anyone outside of Acholi land. Since it is a sickness that only affects children of the Acholi tribe on the African continent, there is a loneliness and harshness which only these families have endured, compounded from the aftermath of a civil-war, poverty, and hunger.
That is why our response to Nodding Syndrome has been grassroots based from within the community who serve in solidarity for the children and their families who are on the fringes. With a small team of local leaders, we have been reaching out to several villages scattered through Kitgum in Northern Uganda, with providing critical needs for these families, like food, livestock, clothing, medicine etc.
We realize that our support is merely a small drop in the ocean, a band-aid solution to a condition that is much larger than anyone of us can take on; but we sincerely hope that if we can stop the bleeding a little, here and there, then we can see so many families transformed and cared for and make their world a little more hopeful.
Our Story
We were approached by Judy DeSouza, who works with Dr. Michael S. Pollanen, Chief Forensic Pathologist of Ontario. Dr. Pollanen had briefed Judy of his visit to Uganda. He was investigating the cause of Nodding Syndrome. Dr. Sylvester Onzivua, leading Forensic Pathologist of Uganda had invited Dr. Pollanen to help with this important research.
“The situation was a humanitarian crisis. Nodding Syndrome (NS) selectively affects one of the most vulnerable subsets of the Ugandan population. Most of the affected patients and their families were subjected to the violence of war and spent years as internally displaced people, living in camps. The neurologic deterioration of affected individuals robs them of their autonomy and the ability to fully engage in the activities of daily living. Their families do their best to care for seriously ill children, despite poor infrastructure and the lack of financial resources”, Dr. Pollanen stated.
We felt an immediate need to help these children and their families. It was time to give back to this country where we had a comfortable life and education. We organized a walkathon, dinner theatre event and a dinner event to raise funds.
Dr. Pollanen invited Gregory Dias to join his team on his second trip to Uganda in 2018. His role was to distribute funds where they were most needed.
Upon our arrival in Uganda, Dr. Onzivua informed us that there were 3,000 documented NS cases of which 508 were from the Kitgum area. The actual number of cases was probably 10,000 and the children ranged from 13 to 21 years. They contracted NS during the epidemic between 1995 and 2005.
From Gulu we travelled to the remote town of Kitgum. This area was hardest hit by NS. We spent several days travelling to remote villages where we met those most affected by NS. It was heart wrenching to see these children suffering from epileptic symptoms, unable to walk or speak. Some had to be tied so that they would not wander off, others suffered from severe malnutrition. Dr. Pollanen clinically tested these patients with great care and documented the results as part of his research. During our visit a young girl was rushed to Kitgum Hospital since she was badly burnt. Sadly, this was a common occurrence since they would lose their balance causing them to fall into the fire. Based on Dr. Onzivua’s suggestions, money was donated for food and basic needs.
This eye opening trip was the impetus of “Help U Grow Charity for Uganda”.
Mission
To prevent families affected by Nodding Syndrome in Uganda from severe malnutrition.
Vision
To empower families affected by Nodding Syndrome to grow their own food.
Board of Directors
Gregory Dias ……………….President
Thomas Francis……………Treasurer
Tyler Dias……………………Director and website
Joan Francis………………. Director
Novarro DeQuadros…..Director
Michael Dias……………. Graphic Designer
The Uganda Team
George Okwera……………Outreach Coordinator
Sam Amet……………………..Outreach Program Support
Richard Komakech…….Veterinarian (Specialist in large livestock)
The Uganda Team has been faithfully and selflessly caring for their community long before we partnered alongside them. Bringing in their expertise from the area of agriculture, veterinary, health and pastoral care, they are able to provide long term support and hope for these families who are suffering, with an illness that has no conclusive scientific cause or cure.