Posted on January 11, 2021
advocacy, Children With Disabilities, chronic illness, disability advocacy, disability education, disability inclusion, disability rights, east africa, education, grief, human rights, inclusion, kenya, loss, muscular dystrophy, people with disabilities, terminal illness
Kupenda’s work includes helping families arrange funerals to honor the death of their disabled child and speaking at these services. Some people with disabilities have shortened life spans even when they have access to the best care. Jerald died peacefully in the loving arms of his dad, from Duchene muscular dystrophy. He was 25 years old and this is what I wrote for his funeral this past Saturday….
Kupenda and Kuhenza are not just about saving the lives of young people with disabilities but about giving dignity to them in life and death. We knew Jerald would die too young, but we also knew that he was a precious child of God who deserved to be loved like any other person.
We mourn the loss of Jerald today. His life was cut short by a condition that was no one’s fault, and no one could stop. I am grateful for the privilege of knowing this incredible young man whom I met just a year ago. The memory of our short time together is close to my heart.
Jerald was so creative and intelligent. He showed us his designs for more comfortable wheelchairs and improvements for agricultural systems.
Jerald also proudly shared his works of art. The attention to detail and his skills were so impressive for a person of any ability but was even more inspiring considering the weakness in his hands. His first artistic creation was a beautiful single yellow rose made from paper. I was so touched when he gave it to me. It sits on my desk where I can see it every day and think of him. He will not be forgotten.
Leonard and the Kuhenza staff came along side Jerald and his family to help them understand his condition, to help support him and make the final days of his life full of love and knowledge of his value. We knew his fate. His family knew his fate. Jerald knew his fate. But he lived a life of meaning and impact anyway.
May we all strive to follow Jerald’s example of resilience, kindness, and bravery as we mourn his loss and ensure others like him in our communities experience the same kind of inclusive love…no matter how long or short their lives may be.
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