The world has remained in a state of uncertainty and that tiny thread of hope, of worry, fears and faith. The Covid 19 Pandemic which gripped the world last year doesn’t seem to be in a hurry to let go of its grip anytime soon, despite the promises on the horizon, there’s still so much humankind has to do to get around the now new normal of living and make the most out of life in the midst of a deadly pandemic.
For those of us living with sickle cell disorder, between navigating the hospital corridors and trying to stay safe from the grips of this pandemic, life certainly looked bleak for many. It was like a never ending battle of gloominess and this could probably lead to a depressive state. Thinking of ways to make these amazing kids see that despite it all, there is still always a reason to be joyful was the highlight of the month of March for us at Joy2Endure Foundation. What was some of the things we did?
A PICNIC
In 2018, we had our first Warrior’s Fun Day Out and the experience was so loved by the warriors and their parents that we decided to make it a part of our outreach programs. When you go through life with a chronic health situation characterized by pain, it is important to see the other side of life. This is our primary reason for organizing these picnics.
And so, on the 6th of March 2021, we had another picnic. Due to Covid restrictions, we tried to keep things small, short and still fun for the warriors and we managed to do that. We remain grateful to Dr. Victor Enoh, Ms Mary Achale and the many others who prefer to remain anonymous but who did great in supporting us make these warrior kids see there’s more to life than pain, medicines and hospital stays. Sketches, fashion parade, touring the Reunification Monument where it took place and many other activities made the 2+ hours a time well spent for the 65 people present, 50 of whom were warriors.
ROUTINE MEDICINE OUTREACH
The expense of living with sickle cell is something that remains immeasurable. The fight to stay alive requires a lot of financial, moral, emotional and other sacrifices. Often times, many of these children and their care givers face a lot of challenges getting the most basic of our routine medicines. In July 2020, during the COVID 19 outreach, we established Our Routine Medicine Outreach Program to fill this need for as many warriors as we can.
In October 2020, my sister and partner in advocacy, Anne Chantal Besong, decided to trade every Ruby wish coming her way as she clocked the big 4.0 to 2.500frs ($5). Her primary reason for doing this was to be able to provide folic acid to warriors in Cameroon. Inspired by our most recent outreach that same October, we had the privilege to work with her to make this dream come true. The financial support which each Ruby wish traded brought forth was so amazing and so, when we got the money, we decided to go to Ndop, a community in the North West Region of Cameroon. The current Anglophone Crisis coupled with the challenges of living with Sickle cell (SCD) made this group extremely vulnerable and in dire need of these medicines. We could only reach as much but we were happy that when we bought the Folic acid and adding a mild pain killer knowing that sickle cell is a condition characterized by pain, on the 5th of March 2021, 50 warriors benefited from this largesse, bringing the total number of those who have benefited so far from this since we started in July to over 200 warriors. Our desire is to reach so many warriors through this initiative and we pray more support does come our way to make this possible.
AND OTHERS… ACT FOR KIDNEYS.
The month of March was also action packed in different ways. From those who read literature thinking about the Shakespeare’s ‘Beware the Ides of March’, to those who celebrated Women and the Black History Month. The highlight of the Month of March was in joining my Kidney Warrior Sister Iya Bekondo and the Green Queen, Wele Elangwe of The Iya Foundation – Kidney Resource Center as they dedicated the Month of March in raising awareness. Joining my voice here was not only to support these amazing sisters, but also to help those with sickle cell learn to take better care of their kidneys. The pain medicines we can’t do without and the daily fights our organs have to do make us vulnerable so, being #Kidneyaware is very important. It was a month of learning and fun as we dressed up, did green smoothies and joined in painting social media green for these precious beans. I will write a more detailed post on kidneys and why people with sickle cell need to take kidney awareness seriously.
My March was funfull and fulfilling and the culmination was being featured as the Woman of the Month by Sickle Cell 101. It was an unexpected but very happy encore to keep doing what I do best…raising awareness and giving support to sickle cell warriors.
Keep reading, keep sharing and keep commenting. We are inspired by your visits and comments, thank you.
ARREY-E.AGBOR-NDAKAW
