Boy, 11, Seeking Aid For Cure From Adrenoleukodystrophy

Harsh, whose father drives an autorickshaw is undergoing treatment at the A.I.I.M.S. Hospital in New Delhi

By Francis Adams

India witnesses 1.25 million infant deaths annually, while 42 per cent of the country's children are underweight, 58 per cent stunted by the time they are two years of age, and 8.1 million are out of school.

  School administrations are still debating over admitting poor children to their schools under the Right to Education act.

  Save the Children, an organisation that is working to save the lives of children and fight for their rights by helping them fulfil their potential has its tagline proclaiming "No child born to die."

And it has this to say about India: "How can India, one of the world’s most vibrant economies, allow the deaths of nearly 2 million children under five every year? How can it let children as young as eight work in the cotton fields? Why should millions of children drop out of school?" 

  It is in the face of such stark reality that 11 year old Harsh Adlakha is battling Adrenoleukodystrophy (ALD),  a rare and dreaded disorder at the All India Institute of Medical Sciences in New Delhi.

  Doctors have estimated the cost of treatment to be about Rs five lakh ($ 8,893.37). Harsh's auto driver father Vinod Adlakha has managed to raise a sizeable chunk of that amount to save his son. However, he is still short and struggling to collect Rs 1,54,580 ($ 2,750). Relief India Trust, an organisation that is working toward facilitating a better quality of life for people, with emphasis on children, has stepped in to appeal to the civil society to come forward and help Harsh's father meet the medical expenses.

See Harsh's complete medical report: http://www.reliefindiatrust.org/harsh.html (The magnetic resonance imaging results of the patient's brain are located at the end of the page).

Those wishing and willing to donate should contact the Relief India Trust.

What is Adrenoleukodystrophy?

According to the National Institute of Neurological Disorders and Stroke, ALD is "one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain. People with ALD accumulate high levels of saturated, very long chain fatty acids (VLCFA) in the brain and adrenal cortex because they do not produce the enzyme that breaks down these fatty acids in the normal manner."

NINDS says the primary characteristics of ALD are the loss of myelin (an insulating sheath surrounding nerve cells or the white matter coating our nerves that enables them to conduct impulses between the brain and other parts of the body) and the progressive dysfunction of the adrenal gland.

To know facts in detail about ALD see facts produced by Marc Engelen, M.D. and Stephan Kemp, Ph.D: http://bit.ly/MZWWu6

For few case studies on children with ALD see Lancet: http://bit.ly/lpMhcT

Although the use of Lorenzo's Oil for treatment of ALD has been questioned and in some cases seen as controversial, it is being widely prescribed. See: ALD and Lorenzo's Oil - http://bit.ly/NQkSVn

The U.S. National Institutes of Health have been carrying out several clinical trials on ALD and related disorders. See: http://1.usa.gov/MZZSqG.