Breath, Brother!
By: Bernard Chiira
Tags: Disability, Sdgs, Uncrpd, Covid-19, Humanity

We lost a friend, a brother and a role model! Rober Ndirangu died on 14th of June 2021 at Mater hospital, after battling for almost two and a half months with respiratory complications and hospital acquired infections as a result of Covid19 disease. He did not die of Covid19 but of the damage it had left behind in his body. We need your help to settle his hospital bill of KES. 8 million and give him the last respects he deserves. Robert was no ordinary bloke, he touched the world in his own special way. He was Kenya National chess champion, a law graduate and one of the most intelligent and talented siblings in our family. Robert had a physical disability. He was a shooting star that fell off the dark sky of a pandemic stricken Kenya! In the pandemic stars like him bite the dust and pay the highest price for having a disability! Let me tell you how it happened! But first some context…

Bernard Goofing around Robert

Robert (or Kade as we fondly called him) comes from the family of Joseph Mwangi Wanyeki and Regina Kirigo Mwangi in Kenya. Our Dad and mom are all past their mid 60s. He is the 5th born in a family of seven. Our eldest siblings Maina and Wanjiku are both diseased. Four out of seven children in our family have had one or more disabilities. I am the sixth born. Our elder brother James and small sister Shiko have no disabilities (that we know of), but they probably understand disability more than anyone we know.

The Covid19 pandemic is still spreading on the African continent, in a silent but deadly trail.

As countries scramble for vaccines, gear-up Covid19 protocols and prioritize frontline personnel like healthcare workers, security forces and teachers, there's a constituent that is being trampled quickly underneath the covid19 survival stampede, unheard and unseen.

I am talking about persons with disabilities. According to WHO, just like frontline workers, persons with disabilities are at a greater risk of contracting Covid19 due to dependence on others for assistance and at an even more dire risk of mortality from severe Covid19 due to pre-existing health conditions.

Let me expound through a vivid true story happening now.

My name is Bernard Chiira. I was born with osteogenesis imperfecta, a brittle bone disease. I developed kyphoscoliosis (curvature of spine and chest bones) at around teenage. Everything from access to education, healthcare, independence and even work has been a hurdle, many that I have successfully crossed! You probably think this story is about me. Nope!. It's about my brother Robert.

I have known Robert from the time I got self awareness! He has been beside me since we were kids. Robert is definitely one of the sibling in our family who had such a strong mix of character, determination and strong sense of purpose. Two years older than me, we have shared all our lives...well a big portion of it at least. From chess to music, computer games and even TV shows such as the Black List and Burn Notice, he was a big influence in my life! We parted ways at cats, cakes and chapatis!

Robert holding his Chess Trophy after Winning at the 2019 Championships

Robert and I both have scoliosis and use crutches to get around. Around two months ago, Robert was admitted in hospital, with breathing complications. He was diagnosed with Covid19 ARDS overnight and was on a mechanical ventilator from his first day of admission at Mater hospital to his last.

We were hopeful that he'd beat this thing and fight he did, until he couldn't fight no more!

In the words of his doctor "Robert would have walked away from here a long time ago, if he didn't have kyphoscoliosis!" Let me explain that a little bit... Covid19 mounts a massive attack on your lungs when it's at its most severe stage. Your lungs drown in thick mucus and the little sacks in them (alveoli) that open up to draw in oxygen, block up! In short you can't breathe on your own. In the case of a patient with already compromised lung capacity, as in the case of anyone with kyphoscoliosis, your breathing problem is compounded!

Robert came out of the tube (mechanical ventilator) 3 times, only for his lungs to fail and be returned on life support twice. On the second attempt he suffered a 6 minutes cardiac arrest but still fought through a third recovery! Only this time the attempts of the doctors to put him back on life support after his lungs failed again were thwarted by an 18 minute cardiac arrest! We are struggling to come to terms with Robert’s death. He fought so gallantly and was on his way to recovery. This time round we thought he had won! On Sunday the 13th of June, not only had he come off the mechanical ventilator and remained stable a couple of days, he was breathing on his own through the NIV oxygen mask. His doctor was confident he was on his way to the ward. Things changed so fast. The ICU called my Dad on Monday the 14th saying Robert was in critical condition and they were doing everything to save his life. We received news of his death with great shock that Monday afternoon.

As we mourn my brother and hang on to the amazing memories he left us, I can't help but appreciate the fact that there is a KES. 8 Million hospital bill between us and his last respects! Robert had no private insurance, just the national hospital insurance fund (NHIF) cover. NHIF was not covering covid19 related hospitalization. With no income of his own as he was yet to get a job, (notwithstanding he was a holder of a diploma and degree in Law) the family has been forced to pay everything from pocket. With the help of friends and extended family, we have raised and paid KES. 2 million. Unfortunately, this is still not enough to secure his body for last respects. If you'd love the help us give him the burial he deserves, here's how you can support his Fundraiser:

Mpesa Paybill: 8040041

Account Name: Robert Ndirangu Medical Fund

PayPal: chiira1st@gmail.com

GoFundMe: https://gofund.me/c456486a

You can share the story and tag #ZeroBillforKade #BringBill2Zero

We thank you for your support and as you do that, let me try bring this story to an end, one that I hope will never be forgotten or as we commonly say in chess, checkmate.

The rights of persons with disabilities. including access to healthcare, the world over are safeguarded at an international and national level. On the international front, we have what is commonly referred to as UNCRPD, that is the UN Convention on the rights of persons with disabilities. Every member state of the UN and the WHO, is subject to this law. That includes Kenya. At the at the national front, specifically in Kenya, we have the Disability Act of 2003, which safeguard the rights of persons with disabilities at the national level. Ultimately, the rights of persons with disabilities to equality and non-discrimination are enshrined and protected under Kenya’s constitution.

As this pandemic unravels and turns life as we know it upside down, I have a few questions to ask Kenya!

Who is prioritizing persons with disabilities for Covid19 testing?

Who is prioritizing persons with disabilities for Covid19 vaccination?

Who is safeguarding the right of persons with disabilities to access treatment and ICU hospitalization for Covid19?

How many like Robert will have to die at their prime or before, for us to wake up and realize persons with disabilities are again unfortunately being left behind in response to the worst pandemic to hit mankind in the last century?

How many Kenyan families, with disabilities or not can afford to pay Covid19-related ICU hospitalization bills pay off-pocket without being driven to the brink of poverty?

Kenyans, are we on our own?

Wake up Kenya, wake up the world and save the lives of the most vulnerable in society. Without catering for the needs of people with disabilities and other marginalized minorities, our sustainable development goals and visions 2030 or 2063 are just but an illusive mirage!

So long Kade, till we meet again, you can now breathe eternal life…no one will ever charge you for oxygen! Heaven needed a chess grandmaster! Kenya needs inclusive healthcare and covid19 response.