Beneficiary:

Evan Cousineau

 

 

 


 

"On Tuesday, May 1, Evan was diagnosed with a very rare genetic metabolic disorder called adrenoleukodystrophy. The only possible treatment is a bone marrow transplant, but even this will not cure this horrendous disease. It is a progressive degenerative disorder that affects his neurons ability to transmit signals in his brain. If you saw, or heard about the movie, 'Lorenzo's Oil', the kid in the movie suffered from this disorder and we are told it is a fairly accurate depiction of the condition. Our journal will update you with information and our daily life as we laugh and struggle down our new path as a family."

The web address is www.caringbridge.org/visit/evancousineau

Evan is nine years old, I have known this family for about 13 years and worked in their home for 9. Mark (my boss) is an environmental consultant who works from home. His wife Gina was a former personal trainer and is now a run around mom. Their oldest daughter, Mary attends USC, Derek, their oldest son, is 12 and plays water polo and the piano, Alaina, Evan's twin, is a great runner and Evan loves hockey.

This is a description of the disease from the ALD Foundation website.

Childhood cerebral ALD. Childhood cerebral ALD is one of the most common forms of X-linked ALD, comprising approximately 30% of all patients with X-ALD. Onset of childhood cerebral ALD occurs between the ages of 2 and 10. Up to the point of onset, development is normal. The most common initial symptoms are difficulty in school, behavioral disturbance, impaired vision, or impaired hearing. After initial neurological symptoms appear, the health of the patients deteriorates rapidly. Further symptoms may include dementia, poor coordination, seizures, hyperactivity, difficulty with speech, and headaches. The average time between the initial symptoms and a vegetative state (where the patient is bedridden) or death is approximately 2 years, although it can range anywhere from 6 months to 20 years.

You can read more about Evan in this Orange County Register Article.