The remarkable life of Joshua

African funerals are always going to be colourful! The more important the deceased, the more the colour. The act of formally saying goodbye to the departed is held dear to most of us, living up to the true expression of paying final respects. As those close to the departed come to terms with their loss, attending a funeral is held as an act of true solidarity and comradeship for the bereaved.

Over the years though, this sombre ceremony has been transformed into a highly commercialised event. What with photographers everywhere taking unsolicited pictures and trying to hawk them off to the mourners in neatly packed portfolio albums; hawkers milling through the tents with snacks and drinks for sale; and even the ridiculous ‘relative’ pawning off little lapel pictures of the deceased to unsuspecting mourners at a fee! The cost of funerals will dramatically rise from the need for security to maintain privacy during such a public event.

Then comes the grand moment of speeches! There will be narrations about the deceased that sometimes leave you wondering whether you knew them at all. Who knew that local politicians now formally announce their bid for political positions in funerals? With the local community in attendance, it certainly serves as a free platform to get one’s name out there.

Well, that said, last week we laid to rest a gentleman who deserved every single accolade said of him on the podium! Joshua’s passing on was more of a conclusion to a whole book on how to live life to the fullest. One of the speakers at the podium declared that Joshua left this world owing no one and with no debt owed to him. I agreed with the first part, but I believe the world owes Joshua a huge thank you for being a lifelong example of how to live life with eternal peace of mind!
You see, Joshua was a special child who grew into a special young man. This was truly exemplified in the tribute from his sisters; acknowledging that when their mother brought him home, she told the girls that they had a special responsibility to care for their little brother. He was the second-last child in a large family of 11.

Joshua was born with Down Syndrome, a condition affecting about 1 in 1,000 babies born across the world. It is the most commonly occurring genetic condition, medically known as Trisomy 21. The cells of human beings have 23 pairs of chromosomes, with each half of the pair coming from each parent, to make a total of 46. In Down syndrome, the 21st pair has an additional chromosome, making them three instead of two. This is what leads to Down Syndrome.
Other common tripling pairs resulting in similar chromosomal abnormalities include Patau Syndrome (Trisomy 13) and Edwards Syndrome (Trisomy 18). Pure Trisomy 16 is associated with early pregnancy miscarriages. Patau Syndrome is less frequent than Down Syndrome, at 1 in 5000 births, but due to significant organ malformations, especially face, central nervous system, and urinary and genital tract defects, many of these babies will die within the first year of life. Edwards Syndrome has a similar incidence but will even poorer outcomes, with 3 in five babies born with the condition failing to make it past the second month of life.

Down Syndrome babies have a much better outlook in life, with a life expectancy of approximately 60 years. This is a major improvement from a life expectancy of about 10 years in 1960, to 47 years in 2007, according to the Centre for Disease Control and Prevention. This improvement is attributed to better acceptance of children living with the condition, and doing away with institutionalization of people living with Down’s Syndrome.
Of note is that Down Syndrome is associated with an increased risk of ear infections and hearing trouble, cataracts, heart defects, sleep apnoea, and Alzheimer’s disease in older age. The heart defects may be minor, resolving with age as the child grows, or may be significant enough to require surgical treatment to ensure survival.

Considering that heart defects are present in over 50 per cent of babies born with Down’s Syndrome, access to timely cardiac care is critical in ensuring survival. Lack of access to quality care then becomes a contributing factor to reduced lifespan for children born in resource-limited backgrounds. They also have mild to moderate intellectual disability, though this is also thought, in part, to be attributed to a lack of access to specialized learning.

Joshua was brought up in a warm and loving home throughout his childhood. His condition was never a reason to be treated differently. He was appreciated for who he was rather than what he could or could not do. Despite having a younger brother, he was the apple of his mother’s eye. Caring for his special needs was never regarded as a chore, but rather an expectation from everyone to pull their weight when needed, to make things easier for him.

What this did for Joshua, was to allow him to reach his full potential without fear or intimidation. Joshua had an uncanny memory, remembering people even from remote interactions. He leant lyrics to songs and belted them out at every opportunity. He had a stint in regular school before transitioning to a special school, for a few years, but his most comfortable association with people was in church! As a staunch Seventh-Day Adventist, he was a life member of the Pathfinders club in church.
It was humbling to watch his church associations come together to give him a royal sendoff. He was decked out in the full Pathfinder regalia; and the Pathfinder membership from the three churches he had spent his entire life in, not only performed a march of honour at the funeral service but were also the pallbearers for one of their own. Even the pastor who officiated his funeral did not disappoint.

Joshua lived to be 44 years old. A rich four decades where everyone he met fell in love with him! He was genuinely warm, fun-loving, open and committed to his family members to a fault. He lovingly identified his brothers by their wives’ names, reminding them that they were tied together for life. In return, they all gave back the love in equal measure. His brothers-in-law built strong friendships with him, and all his nephews and nieces treated him like a celebrity. Though he may have struggled with health issues in his last few years, how the siblings rallied together to ensure he got the highest level of healthcare and home care as needed is beyond admirable.

The most precious legacy Joshua left behind was a son. A little boy who will wipe away grandma’s tears. For a young man, born and raised in a hilly village in Nyamira, I have true admiration for his momma. At a time when Africans hid their differently-abled children from society, many years before the advent of advocacy and support groups for people living with Down Syndrome, Eunice was a lone trailblazer in setting the pace for how her child deserved to be treated! His 44 happy years are a true testimony of her impact!
Dr Nelly is a gynaecologist/obstetrician