AMAZING SICKLE CELL SURVIVOR STORY.
Apr 28, 2022
My name is Japheth Ezekiel Maichibi a.k.a Jaybarry BlessedChild, I'm Abuja based, born 28th February 1989, from a family of 6,four males, two females, I am the last born being the 6th a sickle cell warrior, so also the third born a sickle cell warrior too. I am currently on crutches as a result of some sickling complications battling sickle cell,i am currently out of school due to the present state of my health conditions, but with a year left to graduate, [hoping to go back to school and finish up soon by God's grace]..
I am a sickle cell warrior, survivor, a sickle cell advocate and fighter.
Before I commence, this is to every warrior [everyone] reading this..
\"The pain you feel today is the strength you posses tomorrow. For every challenge encountered, there is opportunity for growth of faith and breakthroughs\"..
God will, never, and would never allow pain without purpose\". Trust in God, have faith and be strong .
Living optimistic is a must way of life living the sickle life.
MY STORY - INTRODUCTION.
Truth of the matter is, I have lived a life of pains ever since my hippocampus and hypothalamus developed to the stage of perceiving, detecting, feeling,storing and keeping a memory of pain encountered by the body. [Not just mare saying, it's true].
Growing up, as a Child living with sickle cell,a lot of activities I wished to partake in but couldn't, staying away from strenuous, activities, cold, malaria, and stress was a major health watch for me,I happen to have the S gene from both parent making me SS which is the most severe variant of sickle cell blood disorder. I was at some point given a wrong impression about sickle cell disorder in general, a preposterous impression that I wasn't gonna live past 15 years of age, while others believe that one overcomes sickle cell from the age of 20 years, sickle cell varies and that's just it. Now this is a serious misinformation,misconception and layman's understanding on the sickle cell warrior community, people are ignorant, and uninformed, some believe and see us as weakly, like walking corpses, looked at with pity, and all that, I don't need pity, we don't want pity,humane compassion, attention and empathy are part of what we importantly need from the public as sickle cell warriors.
Awareness creation is really important and needed here,the discrimination and stigmatization of sickle cell warriors MUST STOP.
At the early age of ten I was cautious of my ailment, life was full of fears I was living for the moment,life was full of torment, but I kept going believing in God Almighty for a way out as in Psalms 23.
Now due to the impression given, I lived life misinformed that I wouldn't live old enough to have a fulfilling life. Today I am 31 years old and still counting and conquering all to God's glory.
THE PAINFUL GENESIS.
October 17th, 2014 was the genesis of my worst attack battling sickle cell,I was diagnosed with \"AVASCULAR NECROSIS \" a complication in sickle cell that causes bone tissues to die or decay as result of insufficient blood and oxygen supply to the affected area, mostly hip..
It all started just when I'd gotten my project topic approved, came home to get some materials from my dad whom also studied psychology..
Got home announced to them I'll soon be done with the university, we all celebrated and rejoiced together.. Not knowing sickle cell was about to strike me with my worst episode.
Aside this, I remember I was told that I was diagnosed with sickle cell at an early age because of the signs, my elder brother is SS so it wasn't hard to detect but I lived a normal crises free life until around 5 or 6 years..[i think]. Truly I don't blame my parents for being affected with sickle cell disorder, my parents didn't know, they got married way back in the 70's when there was little or no awareness nor scientific and technological advancement to detect such things.
Most times I'm sick and out of school for weeks, sometimes I come just to write my exams and thanks to the gift of intelligence given to sickle cell warriors, I aced my exams.
THE OCTOBER 2014 HORRIFIC EPISODE.
So in October 17th 2014 it started like a mild fever, then crisis just as I'd prepared to return back to school to start my project, I remember it was a Sunday, I slept and woke up to take a leak, so after a few steps I could detect hearing a squeaky sound in my left hip, at first I thought it was a normal thing, I called my mom and informed her, my mum who is my best friend nurse and caregiver ever,she asked me to observe it,just like magic that night I couldn't sleep, it was all excruciating pains and hurts, no comfort, no joy, I remember crying all through the night, funny thing is I was battling ankle ulcer even while in the university and only a few of my course mates knew, before Avascular Necrosis AVN affected same left leg..
Fast forward to leaving for the hospital, Allied surgeries in Gwagwalada, had an x-ray taken of the affected leg.
From the expression on the doctor's face, I knew there was trouble, he explained I had avascular necrosis of the hip bone, a complication in sickle cell that causes bone tissues to die, or decay as a result of insufficient blood and oxygen supply, we was told it will require a hip replacement surgery,that was my first time of hearing of such sickle cell complication.
Hip replacement? Woow, my parents and I were totally shocked and lost.. Funny thing is the leg never gave any sign, no pains, no nothing, it just hit me real hard that it affected my hip ball and socket joint.. All badly eaten up from the x-ray revealing..
So what next? We was told how expensive the surgery will cost, which the money wasn't even available [mom and dad are retired civil servants in the education sector]..
Truth is even if we had the funds, the surgery couldn't be carried out, why because I had ankle ulcer I was already battling with before AVN struck.., another sad story, we were told to treat the ankle ulcer first else if we carry on with the surgery, infection will rise from the ankle ulcer to the surgery site..
With the hip pain and ankle ulcer, I was confined to a wheelchair since I couldn't move on my own.. I was confined to the wheelchair for a year plus..2015 through 2016.
Now how come I ended up with an ankylosed or fused knee? Read on!
Due to the excruciating everyday pains, I got used to a particular position, the only point I derived little comfort for sleep, it required I bend the affected leg to a certain comfort zone, gradually like joke, I started having pains on my knee, I couldn't stretch it straight..
What is all this I said to myself!
In as much as it was massaged, whenever I straighten my leg the pain was severely hell, AVN is a nightmare I swear.. Imagine a decayed part of your bone left with rigid sharp edges, every little move was a dose of excruciating pain. If pain were like some kind of medicine, then I'm overdosed in it. Lol . That's how comfort zone damaged my left knee..
Leg ulcer heal, it won't heal so that we can try go for hip replacement surgery.. No way, I was battling AVN, an ankylosed knee, and ankle ulcer, swollen feet all on one body.
Was confined t
on one body.
Was confined to
o the wheelchair ♿ from early 2015 to around june/july 2016 where we got directed to a doctor of Supreme orthopedic clinics, wuse 2 Abuja, who assured us he could perform the hip replacement surgery while the ankle ulcer is treated, it seemed convincing, coupled with the severe pain I was in, we needed a way out fast, so we took the available option.
I've really seen the worst of it all battling sickle cell, thank God we don't look like what we've been through, else I would look so horrible. I've been fighting almost my entire life and I'm not even dying anytime soon, I refuse to lose this bout to sickle cell,trusting in God for life and sustenance and with the power of God on my tongue. I've been handling pains for the past five years now, ever since October 17th 2014, I can't remember a day I lived life without pain till date, I live a life where pain killers are more of luxuries,it is really a torment, every minute on the hour, 24 hours of the day handling and enduring one pain or the other. I've fought this long to give up now, I've come thus far to lose..I just thank God I'm alive and kicking, thank God for supportive family and friends, God Almighty sustained me, I count it all joy unto God's glory.. James 1:2-4,12.
Back to surgery matter, there was no money, we sold some little items, asked for support from family and friends.
Though it wasn't complete the doctor agreed to do the surgery, June I had a successful hip replacement surgery,but the aftermath pain was HELL I TELL YOU, after a week I had a muscle release for the knee.. Placed on cast for a month plus...[seriously that was hell. Being on admission, I remember I hardly caught my mom sleeping, she was always awake, praying staying at alert, mothers are just too special, my mum knew and understood my plight, so she devoted her time for taking care of I and my elder brother. After surgery, weeks later, I Started therapy, I got discharged around August ending 2016.. Came home, though the pain was there I was happy, but my knee cap was damaged already[currently the leg is just straight, can't articulate it 360°.
Like the devil was just on my case, I was born to be great so he's always jealous of me.. After two weeks, my replaced hip got dislodged.. Oh my goodness
How?? Nobody knows, I didn't fall, I didn't lay down anyhow, just like that it dislodged..
Whaat, went for a revision surgery, back into the theater in September, another dose of excruciating pains [I think if pain were to be a drug, then I'm overdosed in it]... .. The surgery was re-fixed, got discharged came home, I was managing on crutches [currently on crutches till date but temporarily I believe].. Had a long stay in the hospital..
Now how I ended up with a dislodged hip again is a mystery.. After a revised surgery, I enjoyed my hip for a month I think, then went for an x-ray to make sure my hip was properly in position, lo and behold, it was dislodged again, [we later learnt from a specialist that the knee is what's affecting the replaced hip, the knee has to be worked upon for me to have a stable successful hip replacement surgery. . I've truly suffered in the hands of sickle cell but God is always faithful to me.
I cried my eyes out later I told myself and my parents, I'm not going through the pains I've gone through for another round, another revision surgery? No way, I'll live with my dislodged hip like that for I am tired, not to talk of expenses and the stress..
Till date I battle the hip pain, the knee pain, and the ankle ulcer which keeps fluctuating in healing..
Heals to a very tiny state, and of a sudden explodes again..
Over the years I've learnt to dress the ankle ulcer myself with everything possible till date it's still there..
The situation has left me appealing to the public for assistance raising funds for multiple surgeries stage by stage and abroad hopefully by God's grace . I wish to be up on my feet again and pursue my dreams. I am still appealing to the public for funds.
As currently I need -
1. A total hip replacement surgery [THR]
2. A total knee replacement surgery [TKR]
3. Treatment of the ankle ulcers and release of the fused ankle.
I truly need the public's assistance as my parent cannot afford the expenses.
I wish to use my story and songs to get heard and supported.
I am a warrior, survivor, fighter and conqueror,a testimony of God's goodness, mercies and glory, I know I have a purpose..
Battling my conditions is like trying to get comfortable on a bed filled with thorns, every angle, position, posture I turn to in seeking for comfort, it was pain like hell, unexplainable undefined excruciating pains. It hasn't been easy on me at all but I am damn bold, tough, and strong determined to surpass this and chase my dreams all to God's glory.
I am a warrior trust me, I refuse to be locked behind sickle cell's cell, I refuse to give up on God Almighty and myself..
Got into song writing, motivational write ups to encourage myself, inspire, dish out hope and encouragement to others out there, creating sickle cell awareness with my story and songs. I currently have 3 tracks, inspirational, sensational, soul touching and lifting songs I did amidst my everyday pains and hurts battling sickle.
1. Blessed child
2. A Brighter day
3. Able God
Attached are the songs links
A BRIGHTER DAY
AS A SICKLE CELL WARRIOR, I KNOW WHAT THE PAIN IS, I LIVE IN EVERYDAY PAINS TILL DATE AS I TYPE THIS, KNOWING WHAT THE PAIN IS AND BURDEN, I'D TRULY HATE TO SEE A NEW BORN BROUGHT INTO A LIFE OF EVERYDAY PAINS KNOWING IT COULD HAVE BEEN STOPPED AND AVOIDED.
Creating sickle cell awareness is a passion for me with my story and songs, I need the public's support, and audience, I believe I have what it takes to be a VOICE in the sickle cell warrior community, an inspiration and a great source of hope and encouragement,a ray of light and Inspiration. Recently Laycon of big brother Naija revealed that he was a sickle cell warrior too with SC genotype, so you see we warriors have a lot to offer, we are intelligently blessed, strong, talented, determined, special, bold, loving, and amazingly awesome.