9-Year-Old Girl with Devastating Skin Disorder Lives in Pain: 'I Can't Play on the Playground' (Exclusive)

Zineb Laalej tells PEOPLE exclusively how she cares for daughter Tayma, 9, who has recessive dystrophic Epidermolysis Bullosa
It's the most severe form of the rare skin disorder, which is often called "butterfly disease" because it leaves skin as fragile as a butterfly's wings, causing blisters, scarring, and infection
"Every kid is beautiful, and some kids are different," Zineb tells PEOPLENine-year-old Tayma loves drawing flowers, playing with her brother, Arsnan, and the color pink.
But unlike other kids her age, summer doesn't mean days splashing in a pool or running barefoot outside — it would cause her immense pain, her mom Zineb Laalej tells PEOPLE. 'The weather is hot, the skin is very fragile,' Zineb explains, and Tayma spends most of the summer indoors at their home in Methuen, Mass. A sunburn or a bug bite for Tayma could cause catastrophic pain.
Tayma has severe recessive dystrophic EB, the most severe form of Epidermolysis Bullosa, a genetic disorder that causes Tayma's skin to blister and scar. It's the subject of Matter of Time, a new documentary featuring Pearl Jam frontman Eddie Vedder, chronicling he fight to cure the rare but devastating condition. Often called the "butterfly disease," it leaves the skin as fragile as a butterfly's wings. That's why Tayma has to wear special bandages and a thin full-body jumpsuit to protect her skin.
As Dr. Diana Reusch, Director of the EB Clinic at UMass Memorial Medical Center in Worcester, Mass. — the only clinic for the disorder in the Northeast — who treats Tayma, tells PEOPLE, 'Every shower and bandage change is exquisitely painful. Every blood draw is terrifying. But she puts on a brave face every time. I am in awe watching her go through a bandage change or medical procedure. She is only 9 years old, but she is a little warrior.'
Symptoms of Tayma's EB showed up shortly after birth, when a nurse brought her over to Zineb to breastfeed. Tayma's mouth was suddenly covered in blisters, Zineb tells PEOPLE. 'The nurse went to take her temperature under the arm, and her skin was removed.'
Doctors whisked Tayma away to the NICU, where she stayed for 20 days. The new mom, then just 23, says it was 'scary,' spending her days sobbing as she and her husband, Tarik, waited for the news about their daughter's condition.
When the family was finally was told it was EB, doctors explained there was nothing that could be done to help Tayma, other than protect her skin from the chronic blistering. Her back has the biggest wound, Zineb says. "The wound is very deep, and it's been seven years. It's not healing."
Dr. Reusch explains the roadblocks to relief.
'As of right now, we don't have a treatment that can be used before a skin blister forms, to prevent the skin blisters [or] wounds from forming in the first place. We also don't have a treatment that works from the 'inside out,' " Dr. Reusch explains. There are few medications for EB, and while there are new treatments, 'we are still missing a cure."
Tayma sees the doctor every two weeks, she tells PEOPLE. 'Sometimes it's bad. And it is sometimes it hurts,' she says. 'It hurts."
When it hurts, she says she goes to her mom. "She just makes it better, and then she wraps it, and then it doesn't hurt anymore."
Tayma's form of the disease is so severe, she needs morphine and ibuprofen to manage the pain. Bath time is brutal; creams, surgeries, and skin grafts haven't worked. As her mom explains, they can only cover her skin in Aquaphor and wrap it in bandages.
Beyond the pain, EB brings other side effects, Dr. Reush explains: infection, malnutrition, squamous cell carcinoma. Some patients' fingers and toes may fuse from repeated blistering and scarring. "Everyone with EB is so different," she says, explaining that there are different types which range in severity. "Some patients with mild recessive dystrophic EB can play football, whereas other people with severe recessive dystrophic EB will blister from a hug, or rolling over in bed.
"There is a serious risk of infection at any age in life for patients with EB," Dr. Reush continues. "There is a lot of variability in lifespan for patients given the variability in disease severity, and we are hopeful for improved lifespan with our new therapies. However, historically, many with severe disease pass by age 30."
"Tayma's parents Zineb and Tarik are incredible human beings. They work tirelessly to give the best life they can to Tayma ... take care of her and sit with her on every hard day."
But the hardest days, Zineb explains, come when people don't understand why her "social" daughter looks different. "Some kids are different," she says, tearfully, explaining that "Tayma's heart is broken when the kids see [her] and cry."
"I know I can't play on the playground," Tayma tells PEOPLE, because the risk of injury is too great..
"On the outside, some kids are different," Zineb says. "Every kid is beautiful, and some kids are different ... every morning when I wake up, she says, 'Mom, give me a hug, give me a kiss.' "
"Every day when I talk to Tayma, I say, 'This is strong, this is brave,' " she says. " 'This is my beautiful daughter.' "
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