ABU DHABI // With laboured breathing, slurred speech and a barely audible voice, Sara says from her wheelchair that she dreads the day the lights go out.
“I don’t want to go blind like my brother and die such a death,” says Egyptian, 18. “I want the last thing I see before I die to be my mother. Not darkness.”
Sara slightly tilts her head towards her 12-year-old sister Shahed, who twirls around her.
Shahed is unable to keep her balance.
“I pray she doesn’t end up in a wheelchair like me,” says Sara.
She is in the latter stages of the disease and has lost the use of her legs and arms. Her heart and lungs are failing. She has had spinal surgery to insert metal rods that straighten her back.
Shahed’s balance is so poor she often falls over. Eventually, she, too, will be in a wheelchair like her older sibling.
“I love to run. I can’t be in a wheelchair,” she says. “It’s hard. Won’t they find a cure?”
Shahed is in Grade 7 at the Islamia English school in Abu Dhabi. Her classmates tease her because she “walks funny”.
“They tell me that they don’t have to be nice to me because I’m sick. They make fun of me and are angry at me because my teachers are so nice to me. They don’t think its fair that I’m treated special and will use me if they want something from the teacher,” she says. “I want to grow up to be a doctor so I can find a cure for this disease.”
Sara attends Arabic and Islamic studies at Al Hosn University. She received a scholarship after graduating first in the Abu Dhabi Educational Zone in the special needs category. It was awarded by Sheikh Mansour bin Zayed, Deputy Prime Minister and Minister for Presidential Affairs.
“I told Sheikh Mansour that I had a favour to ask and I wanted to continue my education but then I couldn’t breathe.”
Her visit was finished before she could continue. “I wanted to ask him to help my sister, to help my mother.
“I’m lucky I got to meet him, and being in the UAE is already a blessing,” says Sara. “But I wish I could have told him to take care of my family for me – my sisters, to see that we are buried here. We were born here and our dream is to die here.
“My parents are old and sick and alone. They have to carry me, bathe me and do everything for me. I wish there was something I could do for them.”
salnuwais@thenational.ae