By Josh Saunders
A little boy whose head is ravaged by deadly tumours is defying bullies who call him ‘monster’ and believe he’s WEARING A MASK.
Amare Stover, from Decatur in Alabama, USA, was born with neurofibromatosis (NF1) a genetic disorder that means tumours can develop anywhere in his body.
By the age of four, Amare had to be fitted with a permanent trach tube because the tumours grew into his throat and risked choking him to death.
The growths have continued to ensnare his skull, leaving him blind in one eye and with learning difficulties.
In addition to twisting and distorting the eight-year-old’s face, his swellings are nearly the size of watermelons.
Mum Kandice Stover, 30, says her son battles stigma every day because of his condition.
Kandice, a full-time carer, said: “He has tumours all over his head, there are a lot of them and they have grown to be very big, which has twisted his face in the process.
“He can’t see out of his left eye, it’s swollen shut because of the tumours and glaucoma, currently he can see from the right one but there are tumours there too.
“The tumours restricted his airway so he had to have a permanent tracheotomy, to make sure he could breathe.
“They are starting to grow to the size of a watermelon and are at the point where the skin on his face is starting to hang down over his tracheotomy tube.
“The size of them affects him a lot, he gets made fun of, gets stares from people whenever he goes out in public and has been called a ‘monster’.
“Some of the children won’t play with him or say he is ‘ugly’, which makes it really hard, I don’t understand why people can’t just be respectful.
“Some adults have asked him where he got ‘his mask’ from, it’s really very hurtful and it only gets worse around Halloween.
“I tell him that he is just like any other eight-year-old and tell him not to worry because people are mean and not right.
“In my eyes, he’s a very normal eight-year-old, he goes through a lot but you would never know it he runs around, loves sports and plays just like any other child his age.”
Doctors believe Amare has an extreme form of NF type 1 – a genetic disorder affects one in 2,500 people in varying in severity.
From one-month-old, neurologist started working to reduce pressure on Amare’s eye, caused by tumours wrapping around his eye-socket.
Kandice said: “When he was born, his left eye was a little swollen, we later found out that he had a glaucoma in his eye and neurofibromatosis.
“The tumours are in the whole of his facial region, his neck and also his brain – and his neurologist has told me they would only get bigger over time.”
In 2012, during an MRI to monitor the growth of his tumours, Amare stopped breathing and had to have permanent breathing apparatus fitted.
Kandice said: “Doctors gave him a trach tube because they thought one day he just wouldn’t wake up and would stop breathing in his sleep.
“Before he used to snore badly, which was caused by him struggling for breath because of the tumours.”
Despite having multiple laser treatments, his left eye has swollen completely shut and now he can only see fractionally out of the other.
With his sight hastily diminishing in his right eye, doctors have told this family to prepare for the worst.
Kandice said: “Doctors have recommended that I start learning braille so that I can teach my son because the tumours growing around his eyes and in his ear canal.
“They tell me he will most likely lose his sight and hearing due to his condition.”
Amare’s facial difference attracts a lot of attention while out in public, with many strangers staring and making hurtful comments.
His mum believes the ignorance is due to people misunderstanding his condition, with many having never heard of neurofibromatosis.
Kandice said: “I don’t mind if people come up and talk to us about his condition, but the staring is really bad.
“We have a lot of problem from the laughing, the staring, the comments, it’s not funny and it makes me really mad but I can’t act how I want to in front of my child.
“I just try to keep my son as happy and as comfortable as I can, I let him know he doesn’t have to worry about anything because I love him.”
Later this month, Amare will consult with plastic surgeons to see if they can remove some of the tumorous mass around his eyes in a bid to save his sight.
Kandice said: “I think they are going to try to remove some of the tumours around his eye so that he can see out of both eyes again, I don’t know when they will try with other facial tumours.
“Doctors have been giving him chemotherapy medication for five years to try to shrink the tumours, but nothing has worked so far but I have to keep hope.”
Kandice, who is a single parent, is fundraising to cover the costs of her son’s medical bills, travelling to appointments and basic needs for their family.
She said: “His fathers I not around, so I have had to take care of him since he was four months old and have struggled to find a job, funds to pay for his treatment and more.
“At one point, I lost my home when he needed surgery to have the trach and g-tube fitted, I had to move in with a friend.
“There have been times where I’ve had to take him five times a month to the hospital and I don’t have a car, so have had to beg people for rides and use the free bus when we can.
“It’s hard to find employment because there are a lot of days where due to my son being on chemo medication he’s too ill to go to school.”
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