A Struggle of Motherhood from Turkey to US: Just to Keep My Daughter Alive – Evrim Kepenek

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Click to read the article in Turkish

Demet Dulkara is one of those mothers who have to carry their children on their backs and their hopes in their hearts. Derin, the daughter of Demet, is suffering from Angelman Syndrome (AS). It is a rare disorder with a prevalence of one to fifteen thousand births.

Due to her disease, Derin can neither walk nor speak. She lives with an abdominal feeding tube as she cannot eat. Both Demet and her daughter Derin now live in Boston, US for Derin’s treatment.

In this process, the US has taken action for Derin based on a special law, the medical teams in Boston are now treating Derin. As for her mother Demet, she has been struggling for life under difficult conditions in a country which she does not know and where she is deprived of any financial support. The only thing that keeps her going is her daughter’s holding on to life.

Derin is the first and only child of Demet. She has gone to the US for her treatment, but she now also has to deal with economic problems there.

Striving to make ends meet by cleaning houses and selling jewelry during their time in the US, Demet is also learning English so that she can take a job in the country and take a better care of Derin.

She designs special clothes for sick children

Demet says that as children like Derin are fed with an abdominal feeding tube, namely a Gastrostomy (G) tube, their clothes should always have a hole in their stomach area. With this necessity in mind, Demet has been designing special clothes for these special children.

Demet says the following about these clothes:

“Mothers like us cannot find clothes for their children. You just buy an ordinary cloth for the child and cut it in the abdominal region, which is sad. There are medical clothes for this in the US, but these clothes are not designed for children. They are not any different than hospital gowns. As for Turkey, there are no such clothes.

“This situation gives the following message to the mothers who have special children like me: There is no room for your child in this world. Why shouldn’t our children wear all types of beautiful, colorful clothes like other children? Why shouldn’t the mothers who have special children like me go to a place and buy clothes designed with their special needs in mind?

“That was how I set out for this endeavor and, with the big hearts and support of two other mothers like me, we wanted to take a step to make some space for our special children and their mothers in the society. That is why I have designed these clothes.”

A donation campaign is born out of special clothes

A Struggle of Motherhood from Turkey to US: Just to Keep My Daughter Alive - Evrim Kepenek 1

Produced in Turkey, the clothes designed by Demet Dulkara for the children fed with G-tubes are sold online in the US. The families who have special children can do shopping on this platform.The platform also enables the people who want to make these special children and their mothers smile to make donations to hospitals. Demet takes the donated clothes and brings them to the hospitals in the US in the name of donators.

‘The sun rises in my life when Derin smiles’

Demet shares the details of the campaign on her social media account derinadaptivellc. “The sun rises in my life when Derin smiles,” says Demet and adds that women are never desperate:

“We can take action without waiting for someone to tell us, ‘Come on, you can do this. It is not over yet, pull yourself together.’ I have taken up a great struggle for my daughter. I have believed that my daughter will live and I have learnt how to embrace the little hopes.

“Yes, today is Mother’s Day (May 10). I and other mothers like me feel this sense of motherhood everyday with worry. We are waiting for our children not from the window or at the door, but at their bedside, waiting with anxiety and hope, wondering whether they will smile to the future or not.”




If you want to donate clothes, the contact info is as follows:

Derin Adaptive LLC
43 Old Middlesex Road, Belmont, MA 02478

[email protected]

(EMK/SD)

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