‘We need help; my family cannot manage’ – 17-year-old Akailia Green pleads for help to battle lupus
Old England, Manchester:
For the past four years of her life, 17-year-old Akailia Green has gone through much more than many of us will ever go through in our entire lifetime, if at all.
Having been diagnosed with lupus, a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue, in 2015, young Green has experienced vision loss for months, momentary paralysis, a minor stroke, seizures, and now complete paralysis from the waist down.
Her family has had to prioritise medication over the basic need of a complete meal, because there is just no money for both.
“It all started when I was at school one day and realised I couldn’t walk. I used to go the doctor for tummy aches so they were thinking something was wrong with my kidneys. No one knew what was wrong, but I was having persistent pains. I went to another doctor and my mother told him of my symptoms. He said it sounded like lupus, ordered some tests and the test confirmed it.”
Green said she had no idea what the disease was before her diagnosis, but thought it was the end of the road for her after doing her research.
“I said to Mommy, ‘Me dead now’ because we had no money to do all the tests, and continuous tests that are required. At the same time, I had to try not to worry, because worrying is a trigger for the disease. The hardest things I have endured were: not being able to see for so long, not being able to talk – I had to be pointing – in and out of the hospital frequently. I had to wear a catheter while I was at University Hospital because I had a prolapse of the uterus, and I had serious constipation issues.”
Missing surgical procedures and other methods of treatment are things she says she knows all too well, because her family simply cannot afford it, and all the avenues through which they could receive help have either not responded or cannot help.
Just recently, Akailia received another mighty blow from her illness which has rendered her helpless and in need of urgent assistance.
“I was just alocking out very often. I had six seizures back-to -back, and I realised I couldn’t walk. This has happened before with me not being able to walk, but after an hour it would pass. This time around, hours passed and I still could not feel anything below my waist, and I knew something was seriously wrong. At that very moment, I felt my mouth twisting and I couldn’t speak: I was getting a stroke and I didn’t even know.”
She said the doctor ordered immediate admission, which was not possible at the public hospital, so her mother had to do everything possible to allow her to stay for a night at a private hospital.
SENT HOME WITHOUT TREATMENT
“The doctors advised my mother to take me home until the tests were done because they couldn’t treat me until they know for sure what was happening – and they know I couldn’t afford to stay there. I need to do an MRI of the brain, cervical thoracic and lumbar spine.”
Akailia said because her veins could not be found, she had to have a portacath inserted, which she says is now exposed because the wound opened during an episode of seizure.
“When I was admitted in the public hospital, I asked for it to be stitched, but nobody did it. It was as if they were saying I have to go back where I did it to get it closed – but we don’t have that money. Before I was discharged from the hospital the nurse just ripped off the bandage and replaced it. I am afraid the wound may get infected now.”
The aspiring paediatric nurse now spends her days lying in bed on her back, hoisted by pillows, clad in adult diapers, but with a hope that this is not how she will spend the rest of her life, and all the positive energy she has around will continue to keep her.
“I fell out of full-time school in second form. I went to third form for about two weeks because I was just in and out of the hospital. I didn’t go to school for most of third, fourth or fifth form, but I managed to do my School Base Assessments. I sat six subjects recently (at CSEC) and I was successful in getting five subjects in grades twos and threes. I could not complete my math exam because I was in a lot of pain, and had to be taken to the doctor. I only sat paper one.”
She continued, “I sometimes ask God, why me, why this had to happen to me, but then I give thanks because I still have life and I still have hope. I am pleading with Jamaica and anyone reading this for help. My mother is not well, but she sells stuff to help us get by. My father is a mason, but sometimes there is no work or he has to stay around to lift me around because we don’t have a wheelchair. Even my brother has decided not to go to college, but to work to help us out. But we need help, my family cannot manage.”
With continuous test and treatment options needed for the rest of her life, Akailia is hoping that she will continue to fight the good fight and come out victorious.
Call Miriam Green (mother) at 876-854-7030 or make donations to: