Aidan's Law

    In June 2011, Aidan Seeger, an American 7 year-old, was diagnosed with Adrenoleukodystrophy (ALD). ALD is a rare genetic disorder, which is characterized by the loss of the myelin sheath surrounding nerve cells in the brain and the progressive dysfunction of the adrenal gland.  In most diagnosed cases, patients die from this disease. This fatality rate is because patients are diagnosed wrongly or because patients do not get a proper treatment.

   When treatment is received before symptoms, children are more likely to not suffer from ALD, but this can only be possible with early detection. Aidan, however, was diagnosed too late. He went through a bone-marrow transplant which was no effective since it only works well in patients that are treated early in the disease. In April 2012, Aidan died.

   His parents, Elisa and Bob Seeger, are now fighting to make testing for ALD mandatory in every newborn child in New York, arguing that it is not necessary for any kid to suffer when they could have early testing to avoid even the symptoms. Also, in terms of money, the treatment is much more expensive than testing- or screen for- ALD.

   In my view, it would keep children from suffering if the so-called “Aidan’s Law”- which goal is to make testing for ALD mandatory in New York-  got passed.  Wouldn’t it be simpler then if every kid had the possibility to avoid this horrible disease? Would you support Aidan's parents' cause?

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