Mümine-Mine brothers and their cousin Muhammed Kayra Kalkan, all three share the same fate. Although they got older, the body skeletons of the two brothers and their cousins did not develop. Father Mehmet Kalkan made a request for medications for the rare MPS disease. The dreams of young people revealed their determination for life.
IT WAS NOTIFIED WHEN THEY WERE 5 YEARS OLD
Ayşe and Mehmet Kalkan, a couple living in Osmaniye, noticed that 25-year-old Mümine and 21-year-old Mine’s physical development was slower than their peers when they turned 5. The Kalkan family learned that their daughter had MPS, which is seen in one in 200 thousand people, at the hospital where they took their daughter. The same disease was diagnosed in 16-year-old Muhammed Kayra Kalkan, the cousin of the brothers, whose fight against MPS disease started at the age of 5. Despite their advanced ages, the body skeletons of 2 siblings and 1 cousin did not develop.
“THERE IS NO CHANCE OF WALKING IF WE DON’T HOLD HIS HAND”
Father Mehmet Kalkan said that they want all MPS patients to take the medications given by the Ministry, whether they walk or not, and said:
“I have two daughters with MPS, Mümine Kalkan, Mine Kalkan and my niece Muhammed Kayra Kalkan, all three of them have MPS. MPS patient Mucopolysaccharidosis is a disease seen in one in 200 thousand people. Bone disorder, skeletal disorder, internal organs grow, but they do not grow physically. Shortness of breath. They have asthma, they have trouble walking. If we don’t hold their hand, they don’t have a chance to walk anyway. The disease started to appear after the age of 5, and there is no cure for it at the moment.
“WE WANT ALL MPS PATIENTS TO TAKE THESE DRUGS”
We use this medicine only to prevent the disease from progressing forward and to prevent it from falling back. We have medicines from abroad, they come to us from the Ministry of Health via cargo from Ankara to our home. We are currently using 20 doses per week, one of which is set at 900 euros. We use 20 flocs, 11 flocs for one, and 9 flocs for one. While getting the report, we take the walking test, the stair climbing test, and the hall test. If these are not approved, they cannot give us medicines abroad anyway. “We want all MPS patients to take all of these medications, whether they walk or not.”
“WE FEEL LIKE WE’RE GOING TO FALL AT ANY MOMENT WITHOUT SOMEONE WITH US”
Mine Kalkan, who said that her dream is to go to university and study psychology or teaching, said, “I have MPS. Due to this disease, we had heart disease during the pandemic period, and asthma and allergic diseases before. Sometimes we cannot talk for very long, our words are not enough. Sometimes we have problems breathing. While walking.” We walk with someone’s support. That is, we do not feel safe without someone next to us, or we feel like we are going to fall at any moment. We constantly experience difficulties in getting medical reports, and we have great difficulties in the walking test. I had a dream to go to university during the pandemic period, so I could not take the exam. “If I were healthy, I would like to study in the psychology department or the teaching department,” he said.
DREAM IS TO BE A BRAIN SURGEON
Muhammed Kayra Kalkan (16), who struggles with Mucopolysaccharidosis (MPS) like his cousins Mümine and Mine and cannot use the medicine that stops the progression of the disease because he cannot walk, said, “I am studying openly now, there was a pandemic, there was an earthquake. Because of them, I could not take the exams. I spent most of my day watching television. “I spend my time playing games on the phone. Other than that, my dream has been to be a brain surgeon,” he said.
(UAV)
