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Valentine was born by C-section at 11am on March 31, 2008 in my 39th week of pregnancy. He was 6.17 lbs and 48 inches long. I had normal pregnancy and all seemed right. During my pregnancy I had genetic tests and the results came back normal.

His birth was a great joy. At six months old he was nicely developed, then the problems started. One day I saw his head drop, then another day his eyes began to jump. Then we decided to visit a doctor, who referred us to a clinic that specialized in Neurology Ophthalmology, Rehabilitation and Genetics.

At 11 months, we had a test done using magnetic resonance imaging, which showed us there was a big problem. The doctor who performed the resonance test, told me that my son has metabolic problems, and with this we should go to Belgrade to see another specialist.

We came back home, packed up the suitcase, and the very next day we were on our way to Belgrade. We spent three weeks in the hospital. They continued to investigate the cause of the problems. At the end of the three week stay I was told the terrible fact: My son, has Menkes syndrome.

Since then, we have lived with this disease in our daily lives, not planning for tomorrow, but always living for today, now, we live in the moment.

Valentine will be celebrating his 3rd birthday on March 31, 2011. His current status is that he mostly lies still and only eats soft or mushy foods. He doesn't cry but often laughs. However he does not talk or communicate verbally. He is very lean, around 18 lbs.

Mommy Búrány Ágnes.





Posted: March, 2011

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