One Woman Making a Difference

Nalan looks like an average Turkish housewife at first glance. When I went to visit her, she chatted about her children, recipes, and learning English. She left the room several times to bring more of her delicious carrot cake and tea from the kitchen. I didn’t realize that she was also walking down the hall to look in on her 17 year old son and make sure he was still breathing.

Nalan is not an average housewife. She is the mother of a boy with MPS and the founder of Turkey’s MPS Society. MPS is a rare disease, a genetic lysosomal storage disorder which leads to cellular damage, mental retardation, loss of organ functioning and ultimately death.

I started praying for Nalan when I learned that her son Emre could now die any day. I went with a friend to visit her so we could offer to pray with her as an expression of love and compassion. I wanted her to somehow know that God loves her.

Would it be all right if we go and see Emre in his room and pray together there?” I asked.

“Of course,” she said. As we walked down the hall, I felt nervous. I didn’t know what to expect, and I hoped I would react appropriately. I felt undone when I saw Emre’s tiny form on the bed. He lay on his side under a blanket with a feeding tube attached to his nose. His ashen face lay expressionless on the pillow with closed eyes and a swollen tongue protruding out of his open mouth. His hair was shaved short, and when I saw a faint trace of moustache above his lips, I was moved to tears as I thought of my own robust 13 year old son who is also sprouting a moustache. Nalan smiled over Emre and bent down to kiss his head.

“This is my boy,” she said smiling with shining eyes. “I’m so grateful that he has lived 17 years, much longer than the doctors said he would. I want him with us as long as possible.”

It struck me then that although my plan was to share God’s love with Nalan, He could teach me a lot through her. I had never seen such a vivid example of a mother’s love.

Although caring for her son is a full-time job with a certain ending, Nalan is not bitter. She does not sit around feeling sorry for herself. First she started an internet network of MPS families, and in May of 2009 she founded Turkey’s MPS LH Society together with five other women.

Working from her living room with her computer and telephone, Nalan is making a difference. Her goal is to reach MPS families with information about the disease, to help them get access to treatment, and to give counseling and support. There are 35 families in the Aegean region alone who are members of the society, but Nalan talks to people from all over Turkey, counselling them as they struggle with the challenges of living with MPS and putting them in contact with doctors who can help them.

“What makes you do this,” I asked her. “Don’t you have enough to do just taking care of Emre around the clock?”

“I don’t want other families to have to go through what we did,” she answers. “When I learned Emre was sick, I said, ‘Where are others. Are we alone? There must be other families going through this.’ We couldn’t find them. We were alone.”

My son didn’t have access to early treatments that would have improved his quality of life. It is too late for my son, but I want to help others.”

I prayed for Nalan and Emre that day, but when I left her house I felt more inspired than sad. Nalan’s example touches me. One woman can reach many lives. One woman can make a difference.