Nexme Marilin

Diagnosis of the child

hypomelanosis of Ito, psychoverbal underdevelopment

Hypomelanosis of Ito is a rare birth defect that causes streaked or mottled patches of skin. Seizures and developmental delays are commonly associated with this defect.

The purpose of the collection

medical examination and treatment in German clinic Diakone Kor

History of the child

Marilyn Nehme is a special girl. From the first days of life she was totally restless: crying all the time without sleeping. But doctors have kept convincing, that it’s totally normal and parents should just let nature take its course. Only after 1,5 years of sleepless nights and lingering doubts girl’s parents insisted on full medical check-up. As a result Marilyn was diagnosed with a disease, that cannot be cured.

‘It was however only the beginning. Our daughter underwent treatment in the national research center “Mother and Kind”, that has surely yielded tangible results. A bit later, in Slutsk, a physiotherapist has helped Marilyn to take her first steps – I will never forget this incredible moment, one that has filled my heart with hope, no, even confidence that there’s nothing impossible, sooner or later it’s all going to work out. Although I understand we have a long and complicated journey ahead, I will spare no effort to help my small angel.”

But at bottom the problem has remained. It seems the girl lives in her own universe, nothing sparks her interest. Endless examinations raise more questions than they give answers.

In 2017 Marilyn underwent EEG monitoring, that has revealed epiactivity up to 95%, that results in intellectual disability. But it’s not an accurate diagnosis and the main question still remains unanswered: what’s going on with Marilyn.

None of the five drugs prescribed helps. And it can hardly be surprising: without an accurate diagnosis effective treatment is impossible. The medical check-up needed can be performed in German clinic Diakone Kork, but it costs 33 000 Euro.

Let’s help Marilyn!