Masese. When Robert was born with a
strange skin condition, the couple’s joy turned to horror at the sight of the all too familiar lesions on his skin. The nightmare of the death of their first child came back in a flood as they recalled watching their first child die after just a few weeks with the same disease. Remembering the rejection by their community, clinic doctors who accused them of burning their child, the insinuations that the condition was a punishment for something that they had done wrong; the fear that they would have to live through this again occupied their minds and kept them from sleep at night. Somehow after a month of listening to their baby cry they knew that there had to be something they could do. Hearing of a young Christian woman in Masese who had helped a child in their community, they set out to find hope.
As Renee was preparing for church on a Sunday morning in September, a young couple came to the gate carrying a small baby. The reason for his cries became readily apparent as Renee carefully unwrapped the cloth covering his little body. Nothing could have prepared her for the sight that met her eyes. An overnight guest at Renee’s house “just happened” to remember watching a documentary in Canada 5 years ago called “the Boy Whose Skin Fell Off.” Within a few minutes on the internet they had a name; Epidermolysis Bullosa. A disease with no cure but with the right resources and treatment a possibility of a chance for life – a shortened life, but still life. In short, the layers of skin do not have the right connecting materials to allow them to slide against each other when disturbed by physical contact and movement. Each touch to the skin causes a lesion similar to that of a 3rd degree burn and without proper care, babies die quickly from infection.
With printed information from the internet in hand, Renee loaded Robert and his mother in her car and took off for the International Hospital in Kampala – about 3 hours away. After reading the material on EB the doctors determined that Robert was the first documented case in Uganda and quickly admitted Robert for treatment. Mama Robert stayed at the hospital for 2 weeks, each day fearing that her child would die, far removed from her home where she had never seen electricity, used indoor plumbing or even walked up a set of stairs. She spoke a language unfamiliar to any staff at the hospital. Her only companionship came from the visits that Renee made every other day to bring her food and sit with her while she watched her child learn to tolerate the treatment that would keep him alive.
The transition from a sterile hospital environment with trained nurses to their mud brick home with a dirt floor and thatched roof and no medical facility for miles was not an option. So, Renee made a “plastic room” in her house that could be disinfected and, armed with a pressure cooker for disinfecting bandages and lots of prayer, Renee brought Robert home to SHC. For 4 months Robert and his mother lived in the plastic room and were loved on by Renee and the SHC staff as Robert slowly started to improve and grow. Communication improved through translation by 2 staff members who spoke her language. Robert’s pain became more manageable and the daily skin care became routine. Soon they were able to leave the house and would walk to church with Renee and the staff on Sunday mornings. Robert’s dad came faithfully every Friday to visit his wife and son and brought gifts such as sweet potatoes from his garden or chipati purchased at a roadside stand on the way. They were so grateful for the help that allowed their son to live, but this was not the way they had envisioned their life as a family.
Robert is now 5 months old. A few weeks ago, after extensive training for both of his parents, Robert moved back to his home in Myuge. His parents are able to temporarily manage his care on their own because Robert is content to be held and can be kept off the dirt floor of their home. Robert will never be able to learn to crawl in their home or have a place to safely play where he can be kept clean.
We have a chance to help this family continue to choose life for their son. To give an opportunity for this couple to love their little boy, watch him learn to crawl, roll a ball across the floor and show the surrounding Muslim community that their child is not a punishment but a gift from all powerful, loving God. An opportunity to be a light for Jesus in a place where he is yet unknown.
On June 17th a team from Radford Baptist Church will head to Uganda to build a safe home for Robert where he can learn and grow. We will work along side of members of his family and community as we pour a foundation for a brick home and plaster the interior with concrete so that it can be washed and kept clean. It will be covered with a tin roof and have windows and a door that will keep dirt to a minimum and allow for the daily washing and bandaging routine that makes life for Robert possible. In addition to building a home, we will be building relationships with the family and community and creating opportunities to teach them how much God cares for them as we share better methods of providing health care and nutrition. It is our prayer that through our actions and teaching that many will come to see and know Jesus.
We want each of you to be a part of this mission opportunity. We are looking for partners in both prayer and financial support; it will cost $2,500 for each team member – a total of $25,000. Most of the funds to purchase building materials have already been collected but this will provide airfare, ground transportation in Uganda, meals (lots and lots of beans and rice!) and lodging while we are there. We will be spending 4-5 days a week in Myuge, many miles from any electricity or running water. During our time there, we will stay at “Betty’s Guesthouse” where we will sleep under a mosquito net in sparse rooms with no lights and wash with a basin of water filled from a jerry can carried by hand from a nearby bore hole. I pray that we will fall asleep each night with visions of the faces of the people we have come to serve and bathed in the prayers from all of you.