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10-year-old with rare disease may be forced to move back to Iraq, stop life-enhancing treatment

Lumar Kalil
Posted at 5:43 PM, May 10, 2021
and last updated 2021-05-10 17:58:05-04

KALAMAZOO, Mich. — A 10-year-old Kalamazoo girl with an extremely rare disease may soon be without the treatment she needs.

Lumar Jalil, 10, has a rare disease called "morquio syndrome". It affects the way her body develops and requires her to get weekly treatments at the hospital.

Her family said they are being forced to move back to Iraq unless they can raise enough money to pay their government.

Unless she and her family can come up with $300,000 by the end of the month, they will have to return to their homeland where the life-enhancing medication is not available.

"I’m brave and strong," said Lumar Jalil who was diagnosed with the rare disease at age two.

At just two years old, Lumar Jalil was diagnosed with the genetic disease that affects her physical abilities.

But, she doesn't let it affect her mindset.

"Normal. It doesn’t feel different," said Jalil.

"She was born with this. She has a mutation in both of her genes. She cannot make any of this enzyme. It affects normal development for her in her cartilage, ligaments, skeleton. You can get depositions in the cornea," said Dr. Katharina Elliot, one of Lumar's physicians for Bronson Pediatric Hematology/Oncology.

Dr. Elliot said the disease requires her to make weekly visits to the hospital for infusions that last five to six hours each time.

While there is no cure, the treatment is crucial to enhancing her quality of life.

"The treatment I take is very important to me because if I don’t take it I will have a short life. If I take it, I will have a long life," said Jalil.

"There is a great deal of variation in how the enzyme defect affects patients. You can have severe disease where you make zero enzyme like Lumar. Those patients usually only live between 10 and 20 years," said Dr. Elliott.

Jalil's home country, Iraq, is requesting she and her family return at the end of the month based on a contract that paid expenses for her father, Erfan Kareem, to attend school in the U.S. to receive his PhD in economics.

If they were to return, it wouldn't be good for Lumar.

"They ask us to come back, but the treatment is not available in our country," said Jalil.

The Iraq government said the family can stay in the U.S. if they pay them money by the end of the month.

"They said if you want to stay here, you need to pay us $300,000. We made a GoFundMe," said Jalil.

The family has until the end of May to raise the $300,000. They have set up a GoFundMe page for those who are willing to help.

Only one in 200,000 people are diagnosed with the syndrome, according to the Children's Hospital of Philadelphia.

Kalil's doctor said there are only a few hundred people in the U.S. with severe cases like hers.