Three times a week, 18-year-old Thonn McMillan travels with his mother from the outskirts of Brooklyn to the SUNY-Parkside dialysis center to get treatment for his kidney failure. Thonn is originally from Grenada, but three years ago he and his mother had to come to New York. At that time, Thonn was already more than a year sick and doctors couldn’t find what he suffered from. He got treated for tuberculosis, but once arrived in the United States, doctors found out he had Wegener’s disease. Thonn needs a kidney transplant to survive, but he can’t get on a list, because he is not a US citizen. On top of that, he and his mom have to find shelter. Now they are staying with family, but they have to move out soon. And they have no place to go…
Thonn is one of the 500,000 people in the US who suffer from kidney failure.
Thonn: I want to live a normal life like other children do and to grow up and to be a big man. I want to go visit my three sisters back in Grenada. I miss them really bad.
The reason why I am here is because my two kidneys are not functioning. I have to get my dialysis. The dialysis removes the toxics out of my body.
Thonn came from Grenada to the US to get help.
But he and his mom can’t find a place to live anymore.
Elfreda, Thonn’s mom: If the problems reach where I have to go back, I have to prepare for the worst. God, forgive me. Back in Grenada, they don’t have dialysis. If my son has to back, he will not live for long. He will die.
Thonn: The doctors back in Grenada didn’t really know what was wrong with me. They thought I had tuberculosis.
Nurse: How did it go? I went alright today? Are you ok? Your blood pressure is good.
A kidney transplant can save Thonn’s life.
But because he is not a US citizen, he cannot receive a kidney transplant.
Thonn: I am upset that as a non-citizen from America I cannot get a kidney until the immigration services are giving us a green card.
Elfreda: it is hard to deal with it that this is my only son, my only boy. He is so young. I don’t know how long he has to deal with this unless he gets a kidney. So I pray to God that the immigration can help us to be here. If I don’t get help I don’t know what other options I have.
Because the doctors in Grenada misdiagnosed him,
Thonn’s lungs heart, brain and kidneys are severely damaged
‘He was 15’, Elfreda says when she looks at her son getting kidney dialysis. ‘He came home from school and had pain in he chest and he could hardly breath’. We took him to the doctor. But he didn’t know what was going on. Neither did they in the hospital. Finally specialists in Grenada diagnose him with tuberculosis. I was reliefd, but after almost six months of examinations, Thonn finally could get some help’.
‘I wish it was tbc, but I wasn’t feeling better after getting treatment’, Thonn continues. After a year my mom took me to the US and the doctors found out I had Wegener’s disease’.
Wegener’s disease is an incurable form of inflammation of blood vessels that affects the nose, lungs, kidneys and other organs. Due to its end-organ damage, it is life-threatening and requires long-term treatment.
Now Thonn is getting treatment at the SUNY- Parkside Dialysis Center three times a week for at least three hours a session.
But still there is no final solution for Thonn’s disease. He needs a new kidney, but Thonn can’t get on a waiting list, because he is not a US resident. Every three months the family lawyer succeeds in renewing their visitor’s visa. But Thonn and his mom are hoping fro a green card, like so many others…
Still waiting for solution, Thonn and his mom are dealing wit a new problem; they can’t find a place to live anymore. When Thonn and his mom came to NY they could stay with friend. But by the end of the year they have to move out. With no money left, Thonn’s mother doesn’t know what to do. All she has is needed for Thonn’s treatment. If they have to go back to Grenada, according to his mom, there is a big chance Thonn will die. In Grenada they have no dialysis and is what Thonn need to stay alive.
Behind the scenes:
I see an 18-year-old-boy, just 90 pounds, skinny, his eyes are glazy. But he has a beautiful smile. That is what people tell him. So he keeps on smiling. I admire Thonn’s courage; fighting this disease, knowing that there is a chance he might never get better. Or the courage to go to the dialysis center three times a week for so many hours.
I feel like an intruder when I am next to his bed, filming what is becoming a routine for him. I feel like I invade his privacy. But he doesn’t matter. ‘That is what I am, that is what I have to do to survive. I am the one who has to deal with it’, says Thonn.
‘What do you want to become?’, I ask Thonn. ‘A big man and I want to go back to Grenada to visit my family’. He stops talking and starts crying. I switch the record button off and let his mother comfort him.
But I feel grateful that Thonn and his mother have let me in their lives for a few days. I hope they find a solution for this. I am convinced that there are many more stories like Thonn’s: people in desperate situations, trying to survive. I’ll hope he and they will manage it.
On Catholic Charities, who support families in need:
Dialysis as a treatment:
Organ Donation Statistics:
Facts about organ donation: