Beyond Unaccountable: Finding a Place for Disabled Orphans
Several years ago I was on an ICN outreach to Uganda, out in the bush registering kids for child sponsorship. It is a difficult process having to dig into a small child’s painful life, trying to find out why he or she is an orphan or completely destitute and unable to pay the minimal fees required to attend school. But, that is why I was there. In the kids’ minds, the simple act of taking their photograph means that they automatically have a sponsor and will soon be going to school just like everyone else. What they don’t realize is all the hard work that goes into then “pitching” them to a loving person stateside who wants to know what this child’s story is, what his or her dreams are in life, and any other information they can hang onto.
Registering these kids for sponsorship is one of the most incredible things I have been privileged to do in my lifetime. Seeing first-hand the light of hope that appears in the eyes of children whose lives were once destined to destitution is something not easily described. But even so, there is another whole class of children within these forgotten, unaccountable orphans and orphans of poverty. What use is a full stomach and education that reaches beyond primary school if society has no place to allow for a child’s success?
Kato Grace gives a thumbs up to the camera during a recent ICN excursion to his hometown of Kassanda.
Special needs kids, God’s gift to parents in America, are often seen as nothing more than an evil scourge, a curse, or punishment from God when they are born to parents in the developing world. These children can receive all the support in the world, but for them to break through and impact society – or to simply have a place within its construct – is going to take a lot of work, work ICN hopes its graduates will one day accomplish.
After registering what seemed an endless line of children who needed sponsors, one of ICN’s field workers, Mr. Hannington, brought me “a very special boy” named Kato Grace. “Kato” is a twin name in Uganda, and I learned that his brother had died at birth and Kato Grace was alone and unable to go to school. He was also severely deformed. His chest protruded out in a sort of bell shape and his growth was largely stunted. Although he was extremely small, he did not have the tell-tale signs of dwarfism, so I knew it was something different. He actually reminded me of the actor who played in the movie Simon Birch, who had a condition called Morquio Syndrome, a rare enzyme disorder that affects the circulatory, muscular and skeletal systems. Being that Uganda does not have a specialist in childhood genetic disorders, Kato Grace was not able to get a diagnosis or treatment regimen. What I did know, however, is that children with Morquio Syndrome rarely make it into their early 20’s.
What can you offer a child like Kato Grace? What can you offer a child who leads a life that is not only completely unaccounted for, i.e. an orphan, but who is even forgotten and ignored amongst his peers?
When Hannington introduced Kato Grace to me, I knew we had found someone special, and I was determined to get the boy a sponsor – medical issues or not, I could tell he was bright and deserved to be in school. If nothing more, his smile melted the heart of everyone on our team.
After returning from the outreach in 2006, I wrote an article for an ICN newsletter that went out to our then meager, but faithful, list of sponsors and supporters. The article featured Kato Grace and called on sponsors to talk to their friends about sponsoring this deserving child. He was snatched up for sponsorship and was able to go to school and receive the love and care he needed.
You see, in Uganda and most of the developing world there are no special education programs, no social welfare. Children born with special needs – if their parents feed them and allow them to grow up – are destined to a life of lying on the sidewalk, dirty, hopeless, and hand open. This is the extent of social assistance for most of the world in which we live today.
Because he found a sponsor, Kato Grace lived with the knowledge that life would never come to that for him. He, along with a handful of others, is one of my favorite kids in ICN’s sponsorship program whom I look forward to seeing on future visits. He quickly became one of ICN’s success stories. Kato Grace has met more Americans and foreigners than most of his peers. He is a sweet boy and finds his way into the hearts of everyone who visits that Kassanda school, deep in the bush of southern Uganda. In fact, whenever a team visits, I think he spends more time in people’s arms than he does walking on the ground. Just a GREAT kid! And then, Friday afternoon, Jennie Windham, ICN’s sponsorship director, forwards me an email from Madam Hope, sponsorship coordinator in Uganda and superintendent of ICN’s schools:
Today I have been moving a lot, this boy of Kassanda called Kato Grace with a big growth at the back and at the chest (I don’t know how it is called) They called me two days back, he was very very sick and went to coma, I rushed him to hospital and in every hospital I went they were refusing to handle the case and finally we went to the biggest hospital (Government Hospital Mulago) and was put on oxygen for two days but unfortunately today he has died and I have struggled a lot to get the body and transport it to Kassanda [where] he will be buried tomorrow. May his soul rest in peace. Inform the sponsor, I have loved the poor boy up to death.
Where is there room for a child in a society whose doctors, among the nation’s most educated, refuse to help him? When I first heard the news, I felt pretty hopeless. Sure, I know his life was better because of sponsorship…but really, that is the whole point of it. His life WAS better because of sponsorship. He may not have gone on to university and been a force of change in Ugandan society, but he was loved by his classmates. He had a seat at their table, the very children who will one day have a seat in government and other spheres of influence. The friends of Kato Grace will remember his smile and perseverance, and because they loved him they will always have a place for others like him.
Kato Grace could have died a nameless and meaningless death, but he did not. He died knowing that he was loved, that he was not alone. And for this, sponsorship gave value to a life that would have otherwise come and gone without anyone taking notice.
If you would like to sponsor a child, ICN has so many available. It is a reputable, grassroots organization that I was a part of pioneering five years ago. You can browse through bios of some of the kids on icnchildren.net – kids who are waiting for someone to step into their lives, just like someone did for Kato Grace.
And Kato Grace, we’ll miss you, buddy!
