Last week, the Lent challenge at my local gym was on my mind. A great blog topic I thought- some of us gathered on Fat Tuesday and weighed in, measured our body fat, and wished each other luck as we gave up a vice (and leavened bread!) to see who could lose the most body fat by Lent.
For me, blogs are spontaneous, and are about what is happening to me right now, on Tuesday morning....
The Lent challenge went awry last week, as I was in Massachusetts at my mother-in law's, teaching at a local multi-arts camp, where both of my kids where enrolled. Two of my friends’ sons participated in the camp as well, and one of the two boys stayed with us. The other boy stayed with his mom, closer to the camp.
The camp was the organic, free-flowing type, filled with creativity and inspiration. The kids had a great time. As the second day of camp came to a close, my friend did not show up to pick up her son. The director of the camp took me aside and told me that she was taken by ambulance to the hospital. There was no diagnosis at the time...
For the next two days, I had three loving, easily excited and energetic boys and my daughter filling every moment of my day at my mother-in law's sweet home.
After 3 days, a surgery, and a lot of confusion, everything went back to normal. My friend is doing great now.
Also during the week, we met up with dear friends of ours who recently re-located to the states from Bolivia, Latin America for urgent medical attention for their youngest son, who was diagnosed with adrenoleukodystrophy (ALD).
Adrenoleukodystrophy? I could barely say it, and was not familiar with it. Then my husband said, do you remember the movie Lorenzo's oil?
Yes, I did. Of the few movies I've seen, I could not forget this one. A heart wrenching story of how a father and mother fought for their son Lorenzo's life. Lorenzo had ALD, a rare disease that, in the early 1990s, was not understood by many and did not have a cure. The husband and wife tirelessly researched, cared and nursed their son to the best health they could, while seeking out scientists and information to create a method to help slow the progression of ALD. The result was a mixture of oleic acid and erucic acid, now named Lorenzo's oil.
According to the U.S. National Library of Medicine, adrenoleukodystrophy describes several closely related inherited disorders that disrupt the breakdown or metabolism of certain fats, creating very-long-chain fatty acids. This condition results in a build up of very-long chain fatty acids (VLCFA) in the nervous system, adrenal gland and testes, that disrupts normal activity. It causes damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain, and the adrenal cortex, because the body is unable to produce the enzyme to break down this fatty acid chain in the normal manner.
ALD is passed down as an X-linked genetic trait, affecting mostly males, since males carry only one X-chromosome and lack the protective effect of carrying two. Some women who are carriers have mild affects of the disease. ALD affects approximately 1 in 20,000 people in all races.
It is thought that my friend's son has the childhood cerebral form, which occurs anytime between the ages of 4-10. We are praying that despite the symptoms he has: seizures, loss of hearing, fatigue, and seeing things that are not there, that he is still able to receive treatment. Treatment with adrenal hormones could be lifesaving. Bone marrow transplants can provide long-term benefits if he is still at the early stages of certain types of ALD, but if it is too far advanced, it could carry the risks of mortality.
Tomorrow, at 3pm is their appointment with a specialist. Please take a moment at that time and send them all the healing energy you can. Thank you from the bottom of my heart.
Elisha Fernandes Simpson CKYT, RYT, aka laughing hearts yoga teaches family, mommy and me, kids (ages 7 -18) yoga and organizes free bi-weekly yoga classes for people with breast cancer. Become a friend on Facebook's laughing hearts yoga page.
NEW tween, mommy and me and family classes beginning in Peekskill at Pilates on Hudson March 5th Huge space, 18 foot ceilings and gorgeous views! Contact firstname.lastname@example.org - preregistration required!